It is a lovely sunny Sunday, the kind of day that brings Minnesotans out in droves even though the temperature is below 50 degrees. It is the kind of day that would have had me out biking, walking the lake or just working in the yard in my former body. It is the kind of day that reminds me why I am in love with Minnesota–fresh air, outdoor people, exercise and taking the time to pay yourself to make life good. It might snow later this week, but get out and get some sun while the getting is good. It puts me in such a great state of mind, anticipating the spring to come. There is new life of the season struggling through the chill in the air. Just two days ago, we awoke to an inch of slush. Today, to see the dogs, the people, the bikes, babes in their Burleighs and kids on third wheels–I can’t help myself. I just feel a bike ride coming with the wind in my face and the road so close, I can smell the heat off the asphalt. Everything is telling me to get ready for the spring that is coming, everything except for my new normal of dis ease in the form of ALS.
Before you feel sorry for me, understand that your sympathy is not why I am writing. Sympathy, for the most part, is overrated. I’m just trying to let you in on the experience of what it feels like to age faster than a speeding bullet. I think I find my current state to be complicated, because in my old normal, I took good care of myself. I was active, careful about my eating. I restricted the bad things within reason (you know I like to drink a beer or two), and I worked hard to put the good things around my body (except maybe getting enough sleep). So it is a little bewildering, believe me. I won’t tell you my past BP or heartrate, my cholesterol, or my oxygen metabolism percentile. That body was a great body, and it kept me feeling centered and happy, because I kept it centered and happy.
We are told that there is a health pathway we put ourselves upon that affects our physical and mental well being, and I think this is true. I still believe that statistically, people who take care of themselves have a better chance for a healthy life. With my old normal, I felt pretty good. My head and my heart were in good shape. I could handle (mostly) the stresses of life and knew enough to get out there and exercise when I felt my worst. And for all the statistics, I guess that I have to remember that whatever is in the great big center of a bell shaped curve, there are outliers that deny the correlations. The lesson here is not about statistics, outliers or correlations. In fact, I don’t think there is a “lesson” here at all, although God knows I look for meaning in the comparison of before and after ALS diagnosis. At the very least, the assumptions of before need to be modified for the realities of after.
This past week, I took my name off of Ev’s and my dual YMCA membership. I just couldn’t justify the cost any more. In my new world, exercise is something that takes energy, but it doesn’t build energy capacity. It is one more papercut, forcing me to continue to discern and rediscern my new reality, and to learn and relearn that the grieving process is one that spirals over and over again. Some of you have said to me that you are impressed with my grace in this process. I thank you for the observation, but make no mistake about it, I’m pissed. I go forward at the speed of ALS, but if I could see a positive outcome for kicking and screaming, I’d do it. I’ve chosen not to use fighting or battling as ways to characterize my relationship with dis ease, partly because it would feel like I was fighting myself. And in a way that is what this process is all about. As we crawl, run or ride toward our own sunsets, each one of us inexorably fights to hold what makes life so fascinating, so interesting, so beautiful, and so absolutely humanly imperfect.
Listen, in the great Minnesotan North, Spring is coming. In spite of the forecast of snow, Spring is coming. And in the beautiful sun of a cold April day, I guess I need to find my new normal Spring—what it means to feel my blood quicken without quickened fatigue, and what it means to follow my Minnesota sense of catching some rays, even when it is 45 and windy. There is nothing like the rebirth of our Mother, and there is nothing like joining the Spring chorus. I think this is the meaning I’m looking to own. As my legs go, more important things emerge—love, life, joy, grief, and spirit. There is nothing like rebirth and growth, even when it isn’t physical. Spring is coming, and it walks, runs and rides me down an emotional pathway that parallels the physical activity of my old normal. That’s what I’ve got. In spite of resisting the lesson, that is what I glean. Some lesson, huh?
There is a line in Mason Jennings’ (a Minnesotan by choice, by the way) song “The Field,” and it gets me every time. “I don’t want no victory, I just want you back.” The song is about losing a child to a desert war, but the line out of context, before I ever figured out the rest of the song’s lyrics, amply gives voice to the gut feeling I carry. I don’t need a medical victory. I just want a life lived. My new life is a road I thought I was avoiding by the way I lived my old life. But, I know there is no avoiding it.
Maybe I will still get in a bike ride, catch a tailwind, and hit 30 mph before it is all said and done. Or maybe I will not. “I don’t want no victory…I just want you back.”
Yours in ALS,