It was my birthday. There was a party. I got presents. The best and the most wonderful present was a kaleidoscope.
How magical. Every colour of the rainbow and every hue imaginable, jumbled, tumbled, scattered, reformed then rearranging themselves into fantastical patterns, symmetrical, ordered, pleasing. Awesome!
Disorder tamed and changed into order. A chaotic profusion of wild, disparate colours gathered and sequenced into beauty, a moving spectacle that you controlled simple by a turn, a little shake, the merest tremor and new patterns emerged.
Every different settling was new, surprising, and magical. There were enumerable moments of discovery filled with joy.
I have a new kaleidoscope. I am desperately twisting, turning, and shaking seeking its order. I want the chaos of my life in this kaleidoscope to fall seamlessly into place, into an order I can understand. My new kaleidoscope is faulty. No matter how I turn and shake and try to encourage it to form Tiffany glass creations of beauty and unity, I fail.
I can see bits and pieces scattering as they fall but they refuse to coalesce and, if a few do by chance, the result is disordered. It is a fusion of confusion. A hodgepodge of the past familiar intermingled with hiccups and blanks of the present. What is created is strange to me though the pieces are familiar. I have failed the course of making sense out of nonsense.
My Bert is my new kaleidoscope. The beautiful patterns we used to make together are now no more. He is a mirror that has lost its ability to reflect; a dancer without coordination.
As a child I wanted to go into the kaleidoscope to see how it worked. I wish I could go into my Bert’s brain to see how it is, see how it works and to see if there is anything I can do to fix it. Then again: “If wishes were horses, beggars would ride.”
The Meander: I kept my childhood kaleidoscope for a long time. It delighted and entertained. Then I lost it. My Bert and I have known each other for 52 years and have been married for 50 years and counting. I suppose that is a long time. He still tries to delight and entertain. It is an effort. I have not lost him. Not yet.
I am early in my journey and the Kaliescope who is my Michael still makes some color, but not every day.
Your writings are helping me process the changes and to place the changes within the larger framework of our time together.
Thank you for sharing ,
Cheryle
It is so good of you to tell me this. That is my fervent wish that through recording my journey I can help fellow travellers on this most difficult road.
Thank you!
Dearest Paula. You write so beautifully about such a tragic situation. You are truly an inspiration. Much love to you and Bert. xx
It is my therapy. It works because it is in my nature to share because I care. My hope is that someone, in particular a caregiver can see beyond the sadness, the weariness and the daily grind to know that though the disease is terrible it is not the end of the world. I am convinced that until the last breath your loved one is in there somewhere and knows you are there.
Yes, it is tragic and I think that fuels my moments of light so I can see beyond the tragedy. Without those moments life would be bleak.
Thank you, Norma. I do appreciate this comment.
AGH!! Paula you once again have pulled at my heartstrings(as a caregiver) with your latest post. At times I felt as though you were speaking about me; my circumstance. I felt like I was having an out of body experience. Where suddenly I became you and Bert became my mother. I dont know if this makes sense or not. All I can say, is this post has had a great impact on me. As if you were speaking to my soul. This really hit home for me. Left me speechless at times.
You truly have a gift for using metaphors to express yourself,your life. Your words, so eloquent.
I’m truly moved.
Thank you Stephanie. It is a difficult road we are travelling. You know that. Sometimes the posts seem to write themselves. This was one of those times. I needed solace and I was consoled as I realize that my Bert is still with me.
This post is dedicated to caregivers like you.
It certainly is a difficult road. That’s a bloody understatement. Pardon my french! lol
I could not have said it better myself; your post definitely “wrote itself” this time. Just incredible.
I can understand the need for solace or seeking a therapeutic release. I used to do that, through journaling. I dont journal as often as I would like to, but when I need to just vent and get stuff out; I got to town. I write until all the feelings are expressed and the emotions released. Once it’s done, it’s like the weight of the world has been lifted off my shoulders. Sweet relief; at least temporarily.
I so appreciate the dedication to all us “caregivers”. We are a growing army, getting larger it seems every day. This is why I’m so much more appreciative of the support of friends like you and Carol and the others we met in Burlington. You all have certainly helped me during my difficult times. So many thanks for that.
You are so right about writing down stuff. It is a very therapeutic activity no matter the reason for writing. I do get such release putting it all down and then when I help someone else with sharing I am even more restored. So glad I met you too.