I recently spent a day in Oklahoma City with my brother, Jim, who has muscular dystrophy. He fell at home a few weeks ago and had to have surgery. He is now in a rehabilitation center. The doctors and physical therapists are trying to get him to a place where he will have some measure of independence. He will not, however, be able to return home. It’s possible that he could go into assisted living, but more probably, he will have to go to a nursing home and live there.
He is facing all of this with a lot of heart and reality. He knows his health has seriously deteriorated and living alone is no longer an option for him. But he is also experiencing, understandably, a certain sadness about his situation. I feel sad for him as well.
Jim was once a tall, healthy, athletic guy. He played baseball in high school. Was a terrific swimmer. He loved to play golf. In his late 20’s he began to experience a weakness in his arms and legs. As time went by and his symptoms worsened he was diagnosed with myotonic dystrophy, a somewhat rare form of muscular dystrophy. The muscles slowly waste away, eventually effecting the lungs and even the heart. The patient becomes immobile and confined to a wheel chair. This has been Jim’s world for about the last 10 years.
He is 60 years old now, still an otherwise young age, for healthy people. But for those with myotonic dystrophy it is often a time when the disease creates a downward trajectory and begins to take a dramatic toll on the body and the spirit. It is somewhat of a miracle that Jim had not previously fallen or had some other devastating effect from his illness.
His daughter and son, and I, obviously want him to have as much quality of life as is possible at this point. And we are all rooting for him to recover from his injury and to enjoy whatever years are left to him.
I went with him to his physical therapy session when I was there last week. They were helping him stand and to try and take a few steps. Though he was only able to do a brief stretch it was a laborious and fatiguing time for him.
I saw others in the large room working with physical therapists. There was an older man with only one leg who was trying to negotiate turns of his body on a wooden platform and learning to raise himself up into a walker. There was a woman who appeared to be a stroke victim who was at a table trying to work a puzzle with hands that no longer function as usual. Another man was exercising his arm movements on a machine that had a large wheel with pedals that he attempted to turn over and over. All of them, Jim included, were straining to improve their broken bodies.
Those of us who do not suffer from some horrible neuromuscular disease, or from cancer, or a bad heart; those of us still fortunate to have our minds and the ability to be completely mobile and independent; those of us who can breathe freely without emphysema or COPD; those of us not disabled by illness and poor health, or whose lives are not sidelined or severely limited by chronic crippling addictions or deep psychological neuroses, those of us who are healthy, are so amazingly fortunate.
There is a world around us of people who live in bodies and minds that no longer work. Some of them are people we know and love. And we hurt so much for them.
Whatever our age we are all vulnerable to the ravages of disease, accidents, injuries, and illness. And that should make us wise.
Writer and poet Mary Jean Irion, has written, “Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I may dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.”
I think of Jim when I read this. I think of all of us. And I want to embrace, just this day, and own its gifts and receive its love and delight in its joys, and make it count. It’s all any of us really have.
© 2016 Timothy Moody