I know the complicated emotional response to a devastating neurological condition passed down in a family. I am in the third generation struck by MS in my family. I understand the fear and the guilt that do not go away.
It was with special interest that I read in washingtonpost.com Carl Luepker’s account of the neuro-nightmare that hit him and now his son, Liam. Carl lives with Dystonia, a painful neurological condition. “For the past 35 years, a relentless neurological disorder has taken over my body, causing often-painful muscle spasms that make it hard for me to walk and write and that cause my speech to be garbled enough that people often can’t understand me.”
Liam inherited the gene and is facing the same grueling ordeal. “As a parent, you hope that your child’s life will follow an upward trend, one of emotional and physical growth toward an adulthood of wide-open possibilities where they can explore the world and challenge themselves emotionally and physically.”
Everyone in the family shares the disease. Lives change. Emotions are on edge because these diseases are relentless. And we see the symbols of sickness every day. “My heart breaks when I see his foot brace lined up with our family shoes in the front hall. He wears it now to deal with the creeping effects of the condition. Just as with me, his symptoms began to show at age 10.”
I cannot imagine. I was twenty-five, an adult when MS blindsided me. How does a young kid process the life sentence that has been pronounced? That is so young to learn the tricks it takes to live a halfway normal life. “His symptoms — his falls, his need to hop at the end of the day because of muscle fatigue and cramping — will continue to worsen.”
Welcome to an unfair world, Liam. None of us asked for this.