Thursday, December 24, 2009

My version of A Christmas Carol

Warning, this one may cause emotions, best not experienced on Christmas...
Such a swirl of emotions and jumble of thoughts are spinning through my mind this morning that the Merry in Christmas seems far away. I need to try to work through it all and see if I can find some way to put a brake on my nasty temperament that doesn't involve bawling.
Yesterday I said something so thoughtlessly mean to my precious son that it takes my breath away. My brain is peppered with birdshot and I can't seem to bring order to the chaos. My irritability is some mix of grief over what I can no longer do at the holidays (wrap presents, cook, see family, have enough energy to go to the Candlelight service); irritation from lack of sleep and knee-buckling nerve pain in my right eye and left thigh; MS caused depression; and a yearning for life without this illness. And, to be truly honest, the wicked echoes of a childhood trauma that is linked to this particular holiday.
Living with me right now is like knowing that there is broken glass embedded in the carpet that won't vacuum up and just when you think it is finally cleaned up, you cut your foot. I've always been the happy, outgoing, friendly one and right now, I would give just about anything to find that girl again. 
My first inclination is to think my irritability is over having to release my internal list of how things should be done, or more accurately would be happily, and busily done by me, if only, if only. Very few people in my life judge me by what I can't do. And, I am just about to the point of not caring what these few do and say. Almost.
The bigger mystery is how to let go of my desire for a certain life that is no longer mine. I know intellectually that what I have is plentiful and enough. I also know that I am not spending this holiday living on the streets or in a nursing home. So much is right here all around me and yet, the tears and longing stay overwhelming.
And, the guilt of writing such a depressing posting on the morning of Christmas eve. I have to remind myself that you all; my family, friends who make up the majority of readers for this blog afford me endless support and empathy. I will do my best to have a good cry and then focus on my 'haves,' while finding room for the ghosts of Christmases past.

Monday, December 21, 2009

My Christmas list...hurry, only 3 days left

things I wish for this Christmas:

  • that everyone take a few quiet moments to connect with the Creator and the miracle of this season. This is my favorite Christmas carol, Enjoy!

  • that all those who want for family, or medical care, or a warm place, or a warm meal would find what they need
  • that I and others would be moved to spontaneous acts of sharing and giving through this season and into the new year
  • that my pernicious illness would lay low for a few days
  • that my Vermont family would miraculously appear on Christmas morning
  • that my Alaska family would also
  • that a good friend's long-haul trucking hubbie would make a safe and timely arrival
things I want this Christmas:
  • that my boy makes it all the way home from the East coast in plenty of time to enjoy the holiday.
  • a pecan pie (I'd share, I promise) and/or white chocolate with peppermint in it; oh, a a little champagne too
  • time with friends and family
  • peace and quiet to savor the wonder of this season
things I have for Christmas:

  • more than enough to eat, a comfy warm home, and my dog snoring blissfully by my side
  • dear friends and family
  • enough health to get by

things, If Santa were real or I won the lottery, I would ask for this Christmas:
I found out today that the Honda Element can be converted. Sorry hubbie, I have a new love.....

Merry Christmas to All

Thursday, December 10, 2009

I Think I Thunk What I Thought I Thunk

Brain, Brain, What is Brain:
I've started the latest post two or three times in the past week. Thoughts skitter in my mind like raindrops against polished glass. No one thought seems to stay long enough to form into a complete topic worthy of writing about. Thought and one's mind are, on one hand, like breathing, the body has lungs, resulting in breathe. Thoughts and the processes of the brain, on the other hand, give structure and meaning to the very essence of who we are.  Brains are essential for the nuance of creating a symphony and the subtle language of writing poetry. Not to mention the humdrum of living, and doing, and being. 
Brains are also at the center of multiple sclerosis. One of the first presentations I saw on MS featured chilling slides of brain MRIs with gaping black holes staring out of the squiggly grey matter that is brain. This was the first inkling I had of what my future could be. Once, at an MS community event, a woman in her mid-forties was there with her family. Her mental function was completely gone. She laughed and babbled senselessly. The image of her haunts me to this day.
MS optimists don't like to talk about the 'ugly' side of this illness. The resulting silence leads to fear and questioning. The 'new' disease modifying drugs show efficacy when it comes to preventing 'black holes.' I do take comfort in this as I inject myself day after day for the past 10  years.
And yet, every forgotten appointment, missed deadline, and subtler mental stumble, leads me to question the MS state of my mind. When I hear folks say that it is just part of getting older, I realize that they don't understand the fear I live with or the future I face or the subtle changes that chip away at my abilities. The first one I noticed was years ago. I could hear a phone number over the phone and write it down when the call ended. Something I had always done without alot of thought. I suddenly noticed I had lost this ability. Poof, gone. Just a little chip, not consequential, but still part of who I was. 
Lately, the fear is front and center. The pace of loss seems to be increasing.
Intelligence, mood, and persona don't reflect cognition. I am still a smart cookie who is mostly upbeat and outgoing. Cognition and structuralism are defined as:

  • cognition: (noun) mental acquisition of knowledge through thought, experience, and the senses.
  • structuralism (noun) a method of interpretation and analysis of human cognition, behaviour, culture, and experience, which focuses on relationships of contrast between elements in a conceptual system.
MS cognitive loss is much more subtle and troubling than mislaying ones car keys. It is losing chunks and bites of things and living with the fear of not knowing if or when I will mislay who I am.

Tuesday, December 1, 2009

Tis the Season to be.....

     What is it about this season that seems to amplify everything in life. My pastor's monthly newsletter column captured, for me, the challenge of Merry Christmas: "Have you ever noticed that there is something about Christmas that turns up the volume of whatever we are going through? If things are good it makes them seem even better. But when things are bad it makes it feel even worse. It is amazing to me that during this time of year when we celebrate that Jesus came to give us hope, some people feel the most hopeless." (Barry Lind, pastor Northwood Christian Church)
     It is as if the Joy, Hope, and Blessing that exemplify this season are just out of reach-hiding behind an opaque barrier that I can't seem to bust through.
I spent an hour this morning talking with a woman who is fighting to not have her home repossessed. She is a single mom, works two jobs, and is drowning in medical debt. Her ex won't pay child support. She is struggling to 'hide' all of this from her kids and give them a special Christmas. But, I could see that she is barely hanging on. Thank God for the BLESSING that is having a committed spouse, a secure roof over my head, and plenty of food to eat. 
     My son came home unexpectedly for Thanksgiving. His college is on the other side of the country so during the school year, we only see him at Christmas. The gift of 10 days with him was such an unexpected treat. At times I miss the little boy who used to jump in my bed and snuggle. At the same time, it is wonderful to see him growing into such a great man. For the holiday he baked three amazing pies from scratch-carrying on the family tradition of skilled cooks. Thank God for the JOY I find in my son, my family and my friends.
    I don't know about HOPE right now. It seems especially far away. The consistent presence of God in my life is my lifeline. I find myself getting bogged down in the seemingly insurmountable obstacles of the past few weeks: a new wheelchair lift, a new heating system; and other costs both material and spiritual that whirl around endlessly in my head. I am struggling with depression and nerve pain. Somewhere in there is hope; I just have to find it. I choose to thank God for the whisper of hope that sustains me.
     The answer to this might just be found in the title for this post: Tis the Season to BE. And that is enough; not be merry, just be. Every moment that my heart beats and my lungs draw air is a gift. Things like playing cribbage with my Dad and warm slippers and a snoring dog are simple pleasures that give meaning to my days. I renew my commitment to live the life I have and to hold to the things that make life livable.