Book excerpt from Chapter 12 of my manuscript, Can You See Me?
…I started with an etching tool because I simply could not stay within someone else’s lines to paint by number. I decided to try to make a ceramic pot prettier using the etcher. Actually, my secret intention was to prove to Jimmy, Louise and Sherry that this sort of thing was only going to frustrate me more, not help me to cope.
It turns out that even with the tremor, I could make some pretty cool stuff. I had to wear my wrist brace and make sure that my arm had something solid to rest upon and allow the tool to do the work. Jimmy kept coaching me, “Let the tool do the work.”
I had no idea that I would be more fully learning a very important lesson about life in the process. I etched whatever the thrift store was throwing out, but soon moved on to painting with acrylics and bought some little canvases, some brushes and some paints.
Louise would take me to Michael’s (an art and craft supply store) to get whatever I needed and I taught Sherry how to help me to transfer from the chair to Louise’s van. I was intrigued and entertained by the mixing of the colors to make new colors and variations of the colors. I actually looked forward to painting.
What I learned was that I could paint fairly well if I didn’t grip the paintbrush or try to control it. When you let go of the control of the brush, you can create something beautiful. I let the brush do all of the work. My right hand tremor is an intention tremor, so when the hand and fingers are more relaxed, there is no shaking. It made no sense to me that I could paint tiny blades of grass on a canvas, but could not write with an ink pen on a pad of paper to make it legible.
There was something meditative about painting for me, and that really helped me through the next year of my life when writing wasn’t really an option. My new friends and neighbors at the apartment building would gather around me when I was working on a new project outside. They seemed happy to see me happy and some of them even ventured out to try new hobbies and coping strategies themselves.
I didn’t sleep well because of the pain, intermittent choking in my sleep and my own thoughts of never being able to live on my own with my dogs again. I still had the “Rule-out ALS” as my diagnosis that I saw each month I went to see my neurologist.
I couldn’t imagine having to die so young, nor could I fathom being less functional than I was already. Worrying about death at 33 with so many hopes and dreams incomplete probably kept me up at night more so than the pain. The darkness that fell was some of the darkest I have felt in my life, and I don’t know how to describe the darkness to do it justice.
In my mind’s eye one night, all I could see was the darkness of night. There were some stars, but they were overshadowed fully by the darkness. I was an emotional wreck and needed to try to do something to better manage myself, so I got out my paints and a small canvas.
The first thing I did was throw the darkest paint onto the canvas with my brushes. There were variations in the dark colors, but they were as dark as I had available. I put a few white dots randomly in the sky to be stars for good measure and then decided that the foreground would be close up blades of grass as if I were laying there in the grass.
Painting the blades of grass was getting tedious and I had been at it for hours, so I decided to leave room for a pathway to the darkness in the sky. After all, I was on that darkened pathway.
The painting evolved, hours went by and I stopped to take a smoke break outside. When I came back in and looked at what I had painted, I noticed something. That pathway with the grass all around it happened to be leading the way to the brightest star I had randomly sprinkled into the sky. I certainly did not plan for that to happen and the message was clear to me.
Except that I was pretty ok wallowing in the darkness. Actually, I was almost angry at this message because it was not at all my intention for this piece at all.
I felt dark, dammit, and now the painting showed my path was not at all into the darkness, but toward that brightest star?
When I got over the fact that it was time to be over the darkness and I realized how silly it was to be angry at a painting for interrupting my dark groove, I understood the message.
No matter how dark it feels for me, somewhere inside me there is still a spark flickering that will see me through until the morning. This was not my first time receiving this message in my life, nor would it be my last…