I was reminded that life isn't always full of grins when my sister Bette, in a late-night phone call, gave me the news I had been expecting, but dreaded: "It's over." My nephew Mike, who should have been in the prime of his life, had succumbed to the multiple sclerosis that ravaged his body.
I once told husband Ray that if I were in charge of the Universe, good people wouldn't have debilitating illnesses and he responded, "No, but you'd be frying bad people right and left!"
His assessment is likely correct, but I have never been able to understand why good people suffer, and I would change that if it were in my power. Mainly, it is in matters of life and death - most recently concerning Mike - that I regret I lack that power.
While visiting Mike at home where he lived with my sister, Bette, or recently in the hospital, it was impossible for me to equate the tall, immobile brown-haired man he was with the sunny, active little boy I remember. For me, he will always be the 6-year-old towhead whose birthday wish was fulfilled with Wompus Kitty, a stuffed black and white cat almost as tall as he was. Or the 12-year-old whose penchant for riding his bike to the river greatly worried those who loved him.
Mike was 25 when he was diagnosed with MS. He was in a wheelchair before he was 30 and bedfast by 32. He was fed through a stomach tube for seven years and breathed with the assistance of a ventilator for six. When the subject of a feeding tube was first mentioned, Mike said that he'd rather be dead because eating was one of the few pleasures left to him. But when push came to shove, he decided he wanted the tube.
One of my friends was quite vocal in insisting his decision was a bad one. But I have always believed that the only person who can decide whether life is worth living is the one inside the body in question. And, should my friend ever be faced with such a decision, she may find that a choice easily made when she is healthy is much more difficult to make when her life is at stake.
A year after the feeding tube was placed, Mike was hospitalized. A doctor called Bette and said they were preparing to place a breathing tube in Mike's trachea. Bette said, "Not until I talk to him!" Mike agreed to think about it overnight and when he phoned Bette the next morning to say he wanted the ventilator, Bette was in agreement. She simply wanted to be sure the decision was Mike's alone.
Unable to perform the simplest task for himself, Mike endured every indignity life offers, but he never lost his dignity. He found joy in listening to music, the songs of birds on the patio and in the love of his family and those who cared for him. His favorite Biblical character was David - fooled me, I thought it would be Job - and one of his aides read the entire Bible to him three times.
Through all his travails, Mike maintained a pleasant demeanor and a sense of humor. When a beefy aide once picked up Mike and cradled him in his arms to transfer him, Mike looked at him in mock adoration and said, "I wuv you!" The guy laughed so hard, I thought he was going to drop Mike. And every time I'd say, "I'll be back," when leaving Mike's bedside, he always mouthed the obvious - "I'll be here!" - with a twinkle in his eye.
When Mike required full-time care, Bette, long a single mother, left a good job to care for him in her home. As her savings depleted, she learned to feed Mike through the tube, suction him when necessary and put medicine into his IV. She never saw her labor as a sacrifice and why should she?
Everything she did, she did for the love of Mike.
- Marsha Henry Goff is a freelance writer in Lawrence whose latest book is "Human Nature Calls."