PALs are people living with ALS. It’s a common term you’ll hear when people living with ALS and their loved ones are talking about themselves.
During the 18 months of my brother’s life following his ALS I never thought of, or considered describing Randy to someone else as an ALS patient because to have identified him as such would have first defined him by the disease he had and not the person he was.
Randy wasn’t ALS. Even as ALS took his ability to stand and walk, tie his own shoes, or bathe himself, Randy was still Randy. Confined to a wheelchair he was still Randy. Unable to chew and swallow food, he was still Randy. He was a brother, a husband, a son, and an intelligent, wickedly funny, kind-hearted man before ALS entered his life until the day he died because of it.
This is why I and so many others with a personal connection to ALS choose to use the term PAL when talking about our friends and loved ones with ALS, because we refuse to limit anyone’s humanity to a thing as hideous as this disease.
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