THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Sunday, August 11, 1996 TAG: 9608070074
SECTION: REAL LIFE PAGE: K1 EDITION: FINAL
COLUMN: The Imperfect Navigator
SOURCE: Alexandria Berger
LENGTH: 67 lines
I WILL CALL him ``Speaks With Bright Eyes.''
His real name is Robin Heath, and he suffers from a slowly progressive form of muscular dystrophy - facioscapulohumeral dystrophy, or FSH.
Robin's eyes give the only clue to his emotions.
There is no visible sign of laughter, pain, fear, sadness or surprise when he speaks. No expression. Instead, his mouth moves up and down in a choppy motion.
The muscles that move Robin's face, shoulder blades and upper arm bones have long since deteriorated. With FSH, weakness spreads to the muscles of the abdomen, feet, upper arms, pelvic area and, finally, lower arms.
Usually, the first symptoms occur in the teen-age years. Robin's symptoms began at age 5, simultaneously matching those of his 3-year-old brother, Thomas. As children, the boys could not whistle, drink with a straw or blow up a balloon. Their eyes were never fully closed during sleep.
At age 19, Robin underwent grueling surgery to straighten his spine, curved and distorted from lack of muscle support. For two more years, he continued to walk with the use of a cane. Now, Robin uses an electric wheelchair, a gift from the Muscular Dystrophy Association. His legs have atrophied.
Picking up a coffee cup, Robin, now 27, uses both arms, making his limbs appear parts of an Erector set. Clamping one arm to the other at the elbow, then pivoting the arm, he guides it to the cup. With studied movement, he swings the arm grabbing the cup and lifting it to his lips.
Accommodating and adapting to this muscle loss is a never-ending compromise. Wasted muscles seem like wasted years of dissolving, rather than building. Pretty lousy for a kid growing up. Pretty frustrating for an adult, who must continually reassess ways of surviving.
On the day of my visit, Robin and I do not talk of his problems chewing, swallowing and speaking. It goes with the territory. We talk of his brother and their closeness, a brother whose condition is progressing faster than his own. Living alone in a tiny Virginia Beach apartment, Robin shares his dreams, his discoveries with me. Years of being different, of feeling cheated by an incurable disease, left a deep scar, now filled by new visions.
He dreams of having a home in the country, a wife, a family. He dreams of being an artist, a writer. He dreams of playing the guitar again, when the dexterity returns to his fingers. No longer bothered by those who see his flaws, Robin's focus is on the greatness that lies within him, on discovery of his potential. His continual quest has taught him to celebrate his uniqueness, to honor his difference. He no longer dreams about being free from muscular dystrophy.
Instead, he studies the origins of his Celtic heritage, the ancestral laws of American Indians, the philosophy of the Hindus, secrets of ancient Jewish mysticism, the teachings of Christianity. Were he normal, unfettered by disability, he would not seek such answers, for there would have been no questions.
``If people want to remember anything about me,'' he said, ``you can tell them this. A really good friend told me, `You can be anything you want in life. Just manifest it.' I didn't always believe that. I thought the only way to survive was to wait for a cure for muscular dystrophy before I could become a whole person. That one word, `manifest,' empowered me to live my life, accept my body the way it is and do what I want to do.''
``Speaks with Bright Eyes'' sees himself as perfect just the way he is. And so did I. It is the way the chronically disabled survive.
It is the sacred way of the human spirit. MEMO: Write to the Imperfect Navigator, c/o Virginian-Pilot, 150 W.
Brambleton Avenue, Norfolk, Va. 23510. by CNB