When Deb’s mother died we inherited a house full of art – all of it beautiful. One of my favorite paintings we already owned, though. It is one we bought ourselves; it’s called Chicken in the Sky. It’s an oil painting on canvas done from the perspective of a passenger in the front seat of a car on a highway in the countryside. The road ahead has the kind of gentle hill you get on flat land. The highway and the few vehicles on it take up only about a third of the painting. The other two thirds is sky; its background is a brilliant blue and white and its foreground is filled with gray clouds, many of which are shaped like chickens. Yes, I said chickens. The scene captures a moment in a road trip Deb and I took with her cousin Jane. At one point we were bored and tired so we took turns resting in the backseat. When it was Jane’s turn she lay there and just when the car was dead silent she suddenly exclaimed, “The chicken in the sky is not moving!” All of us startled a bit at the sudden announcement in the silent car and then we fell into gales of laughter at the oddity of the comment and at our startled response.
Jane is a professional artist and when Deb and I heard that this painting was for sale in one of her shows we laid claim to it. When Deb’s mother died we combined ours with the paintings by Jane she had in her home and hung them all in the den where we spend most of our time. We call it the “Jane Room.” I find myself looking at the Chicken in the Sky frequently during the day, not only because it’s an interesting piece of art but also because it reminds me of a wonderful trip. Not only was trip was one of the most enjoyable we’ve ever had, but it was right before I was diagnosed with MS making it feel like a kind of last blast of life among the “Normals.” All of us – Deb, Jane, and I – look back on that trip and see that the MS symptoms were very clear at the time. We were traveling in the middle of summer out west. More often than not when we got to a site that required walking my legs simply would not move. Nonetheless, that summer was the last time I enjoyed blissful ignorance about MS. Beginning the next fall MS would be constantly on my mind. I would think about it, research it, write about it, read about it, talk about it, and live with its constantly progressing symptoms every day.
It seems to me that one of the painful things that chronic progressive illnesses do to the lives of people who have them and their families is that the diseases themselves become ever present in the world we inhabit. They aren’t just ours and they aren’t just in our bodies; they live, they breathe, and they take up space. No matter how hard we try to push them to the periphery they consume our bodies and our lives. Some days, I realize that I have talked about MS almost exclusively during the day. I am a trained academic who has any number of interests in a wide range of topics, and at one point in my life I talked about all of those all of the time; now that my body changes constantly I feel so aware of the physical symptoms that it’s hard for me not to wonder where they come from and what they are going to mean in my life. Will they be permanent? Will they progress? Are they related to the disease? Are they related to the medications? All of these questions and the constant discomfort lead me back again and again to the topic of MS.
As I’ve become aware of the way MS takes over my consciousness I have worked to counteract that phenomenon. Each day I read something unrelated to the disease. I talk about something unrelated. I make sure to laugh a little, to try to live in the present and be happy, and to enjoy what my body can do now as opposed to worrying about what will happen in the future. That said, it’s hard not to think about the progression of the symptoms when I feel it happening consistently in all parts of my body. There’s no way to sugarcoat it; MS does what it does and there’s nothing we can do to change it. At that the side effects of the powerful medications we take to control the symptoms of the disease and the struggle to occupy my mind with topics other than the disease is nearly impossible. So, thinking about that chicken in the sky and the trip we took that last summer before I knew about MS reminds me of what it was like to be blissfully ignorant of this disease and the ravages it visits upon my body.