I visited my brother, Jim, in Oklahoma City this week. I have mentioned here that he has myotonic dystrophy, a slow degenerative disease of the muscles. He fell a few months ago and has been recovering. He is now in a nursing center and will not be able to return to his home where he lived alone.
Because the lungs are muscles too, his are weak and failing. So he is on oxygen now around the clock. He wears one of those small tubes inserted in his nostrils that wrap around his ears. You don’t notice it after a while. I hope he doesn’t either, though at times, his breathing is labored. He does notice that, as I do, and my heart wilts momentarily for him until the air returns smoothly again.
We had a good visit. We of course talked politics, how does anyone avoid that after the national shame we’ve all endured? He did not vote. He was struggling with his injury and simply was not able to absentee vote. But we talked about how he would have voted and how I voted. It was a good discussion. He thought I threw my vote away on Jill Stein, but he didn’t say it with any malice or anger. We’ve always been able to disagree and still love each other.
We talked about movies and life, and death, too. It hurts me to think of how much of life he will eventually miss, because his illness does not allow a long lifespan. And I hate that so much of the life he has had has been wrecked with a terrible debilitating disease.
At one point, Jim said, “You know, I wish I could walk again. Just walk. It would be so great to simply get up and walk.” And I had to hold back tears because the longing in his words filled me with such sorrow. I often think of Jim when I am climbing stairs anywhere. I think of how he used to take them two at a time, running up them with so much energy and ease. I walk stairs now in his honor.
The English novelist and philosopher, Aldous Huxley wrote, “Most human beings have an almost infinite capacity for taking things for granted.” Yes, we do. Walking. Breathing. Health. Most of us accept these physical gifts with little thought.
Jim was married and has two grown children. After his divorce some years ago, his illness, which was already a burden for him, accelerated. He has lived a solitary life since then. I had hoped he would meet some lovely woman who would not be just a caretaker but a companion, a lover, a friend. Someone to share his fine mind with. Someone to hold when the body gave way and all the fears of that rushed in. Someone to share laughter and goodness and connection.
But, on his own, he managed. In his insulated world he still opens himself to certain people with humor and kindness. He’s not always a great patient, being at times irritable and abrupt, but who wouldn’t be with a body so broken and a life so robbed of potential. But I see him at times interact with the nurses, and his daughter, and out of the turmoil of his declining health and a body frozen in uselessness, his old spirit returns and something beautifully human is exchanged. A smile. A funny comment. A friendly welcome. A willingness to cooperate with the tasks of moving him or adjusting bedding and so forth.
At my leaving, I leaned in to hug him. He squeezed me tightly and held on. I did, too. On my way home I thought that it is way past time for me to be thankful. For him. For my own health. For our children. For memories, that time or disease cannot tarnish or end.
I was listening to Leonard Cohen in the dark as the road stretched before me. These lyrics are for Jim. My Thanksgiving wish just for him:
“Oh the sisters of mercy, they are not departed or gone.
They were waiting for me when I thought, I just can’t go on.
And they brought me their comfort and later they brought me this song.
Oh I hope you run into them, you who’ve been traveling so long.
Yes you who must leave everything that you cannot control.
Well they lay down beside me, I made my confession to them.
They touched both my eyes and I touched the dew on their hem.
If your life is a leaf that the seasons tear off and condemn
They will bind you with love that is graceful and green as a stem.
When I left they were sleeping, I hope you run into them soon.
Don’t turn on the lights, you can read their address by the moon.
And you won’t make me jealous if I hear that they sweetened your night:
We weren’t lovers like that and besides it would still be all right.”
© 2016 Timothy Moody
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