It’s time for me to move my bedroom downstairs. I’ve thought about it for awhile. This last time I fell down and whacked my head hard scared me. The instances when I’ve teetered at the top of the steps, to get down the flight of stairs in my home, unnerved me. How my hands have slipped on the stairway rails and how I have dragged my right leg up each step at a snail’s pace points out to me that my days of stair climbing draw to a close.
The problem I have of leaning from one object to the other in my current bedroom–so my toes don’t catch on the carpet and send me to the floor–speaks to me also, telling me it’s time. I’ve cried over the move that must come, and I probably will cry some more before it’s done.
A new normal
It tires me, constantly adapting to a “new normal”. I look back in the six years since I’ve been diagnosed with MS, and the decline has been steady, at times almost imperceptible but there, ever in the background. It’s happened as one watches a plant grow. An observer can’t see the change from minute to minute, but over days, weeks, months vast change can occur.
I told a good friend recently that I often imagine looking in the rear-view mirror of a vehicle, which represents my life, and constantly grieving for what was. What is past and no more. At least when I look out the glass of the front windshield, I realize that I’m headed toward something better.
A word both frightening and exciting. I try not to fear the constant change in my deteriorating health, but I find it a challenge at times like these when it so interrupts my familiar way of living. A great distaste settles in me for finding new ways to do what I did weeks ago with little difficulty. Or I must simply give up doing, as I have in some activities.
My craft room will become my new bedroom. I grieve at the thought of losing my private, creative area—my own little indoor “she shed”. Ahead of me lies the task of transforming the space and emptying out the ingredients of cherished pastimes. My piano must go, on which I’ve played countless hours of music and written and composed over twenty songs. I need to sort through my crafty paper paraphernalia, rubber stamps, inks and the like to see if I want to keep anything, and I also have to consolidate my fabrics and beading supplies. Then I need to find space in my dining room or living room for my sewing table and the old white dresser I keep fabrics and such in.
My world grows smaller by the year. Much, much smaller…
Yet, in a way it’s grown larger. I have friends on social media around the world, and my books are being read by people on the other side of the globe. That makes me happy and in a way content that even though my physical space decreases, my influence has not. My words and thoughts reach past these four rooms that I live in.
Today, I had planned to blog about my research and the origins of the story for my upcoming book, Harvest Moon, but instead you are getting a taste of my present life and the things I face. I’m sharing my feelings and thoughts because we all want to see what’s behind the curtain. Being transparent and dealing with our issues, often allows other to as well. This is my life, my troubles, my joys, and everything in between as a writer and a person. Here on this blog, I am simply me. You won’t find anyone pretentious blogging in this space, just a woman who’s lived through joy, much pain, and grief and will likely live through much more.
I want to leave you with this thought: “You are more than what you can’t do.“
When I first started to have issues with disability and a body that wouldn’t cooperate with my demands and reflexes, I let it define me, crush me in a way that nothing else ever had. What I could no longer do or do well became an enemy I resided with every day, an enemy who knew how to taunt me, guilt me, and anger me in ways I’d never felt before. Until I realized that I was more than what I couldn’t do, and I made up my mind to remember that.
I’m reminding myself today. Maybe you need a reminder too.