If you’re a person of devout Christian faith, I want to warn you that you might be offended by this post. ALS poses a problem for conservative Christians. For many of them, it doesn’t fit with their worldview. They don’t know how to deal with it, or how to comfort or help someone dying of an incurable disease. I assume they have good intentions when they tell me they’re praying for me, that God will heal me, but such efforts are awkward at best, but really they are hurtful and insulting. Every time I see my mother-in-law, she hugs me with tears in her eyes and says, “I’m praying for a miracle. I know God can heal you. You just have to have faith.” A long-time family friend told my mother that she’s not praying hard enough and that’s why I’m sick. Another friend of my mother gave me a “baptismal cloth” that her church prayed over and dunked in the baptismal font. She gave it to me with a note that said I’m supposed to sleep with it and God will heal me. The note said that she expects to hear the good news of a full recovery. I watched my grandfather, a devout Christian, suffer and die from ALS thirty years ago. My dear grandmother, the most genuine Christian I’ve ever known, died of cancer at 65. My uncle got polio when he was seventeen and was paralyzed from the waist down for the rest of his life. He became a minister, and many times people questioned his faith and devotion to God. How could he be a minister to others when he didn’t have enough faith to be healed himself? People actually said this to him. What kind of God creates such an insidious disease? It’s not in me to help them process my disease and the devastation it is causing my wife and sons (my youngest is fourteen, and that’s the thing that hurts the most, as Juan wrote in a post about “heartbreak”), or to make them feel better. I would prefer that people say they love me and genuinely ask what they can do to help me and my family. I would prefer that they bring us a dinner, or mow the yard, or raise money to help with medical expenses. Maybe I’ll use the baptismal cloth to wipe my ass when I soil myself.
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Well said!
Steve, thanks for this necessary reflection. Faith is a very personal matter, and I respect others' beliefs. I politely thank individuals when blessed and move on. You definitely bring to light the lack of understanding of ALS and its devastating impact on lives. I've also been offered the curative effects of certain fitness equipment. As if to say, just walk it off.