Topsy Turvey

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,

Bruce

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6 thoughts on “Topsy Turvey

  1. I’m sorry Bruce, I want to be positive and supportive, but at the moment, all I can do is anger, the line in your latest entry that I could most relate to was “I’m pissed!” I won’t stay here and neither will you, but it is inevitable that anger will sometimes win the day.
    Terri

  2. As someone who has grown up loving and needing to exercise and work out, and knowing what a good workout does to your mind and spirit, I truly cry with you in this latest paper cut. Every since I read your post I have been wondering what you can do. Last time I visited, you and Ev, you guys talked about buying a tandem bike. Is that something you could do with Ev in front? I also thought about sky-diving—you just hang there and feel the rush. Surely if God is closing this door, there is some window…even a small one…..that He will open?

  3. I haven’t said anything here yet, but know that Anna and I are closely following your journey. We will pray for victory, but will settle for getting you back too.

  4. The story I’m thinking about is, indeed, Topsy Turvey. Things are all reversed.
    In the classic story it is the old man who is slowly dying and the young man who comes to visit and to listen to words of wisdom. But I am the old man, and it is the
    young man who is putting words together with clear wisdom and great depth.
    While it is not all impossible that Bruce will outlive me, I find the old adage
    that the teacher learns most from his/her students to be very wise in the present
    relationship. And I would love to be able to visit Bruce and Ev every Tuesday as the
    M. Albom story relates. But I am grateful for the blogs, and read them over and over.
    There are not as many comments as one would wish for, but I think it is safe to
    say that folks really don’t know what to say. We’re just stunned and speechless.
    Thanks for your writing, which edges on poetry, dear friend. It helps us, and I
    believe it helps you too.

  5. Bruce, your messages always leave me feeling very centered and grounded. The Spirit speaks to me through your words. You are one of my angels with skin on. Love you and Ev and hope to see you on Sunday. Love to you both, Jayne

  6. I think your grace is in the insights and in the words that pour out of your emotion, whether it be disbelief, sadness, anger, or some kind of acceptance, certainly awareness. It seems to me that your mind and your spirit become more acute and intuitive as your body betrays you. And, I celebrate your pissed-ness!

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