Isolation. Why friends abandon us. The meaning of courage.
Submitted by Atsugi on Fri, 07/10/2015 - 14:48
Up to now, I've always been curious why people would say 'you're so brave' facing ALS. It just didn't make sense to me. After all, we're just doing what we have to do. Friends and family have abandoned me. Sometimes, ALS will even destroy families. I've seen more than one spouse leave a PALS. Why? People can't relate to ALS. The 'terminal' part of the disease freaks them out. They can't get it out of their minds and they don't know what to say or do, so they panic and avoid us. Even our best friends get really uncomfortable and might clam up. When Krissy fell ill, all our friends abandoned us. (But curiously, our kids' soccer teams gave us cookies and even delivered a fancy home-cooked meal to us.) Even Krissy's parents were so distraught that they visited only once--cross country--but never visited again when Krissy was dying. They didn't come to the funeral. I figure their hearts were destroyed. At one awards dinner for our son's soccer team, no one would sit at our table. It was the most embarrassed I've ever been in my life. So we left, pushing her wheelchair in front of everyone. That evening, we erased them all from our speed-dial. This isolation is horrible. But it's understandable. In fact, I'm guilty of it. When my dad was in a dementia ward (far away) for five years, he couldn't speak, but he could hear. His sister called him daily and simply spoke into the phone to him, telling stories; she was an amazing and enthusiastic talker. But the rest of his family, including me, rarely called. I just didn't do well speaking into a silent telephone with no response. I know it made him feel lonely, but none of us could bring ourselves to call very often. And our visits were short--what do you say or do with a man who is unresponsive? I feel guilty. But I guess guilt is not a powerful enough motivator. On the plus side, 'strangers' like us PALS and CALS on this forum have a bond in common. Perhaps we have come to accept the terminal part of the disease. We have empathy with people in our circumstances. I feel a part of me is in every PALS and CALS. I know we would help each other, not just with words, but also with actions. We donate equipment to each other. We sometimes travel to meet each other. A person from this forum came to Krissy's funeral. I would definitely travel to meet and assist a PALS or CALS if they needed it. Now I finally understand what people mean when they say PALS and CALS are 'so brave.' It takes great courage to face death and not panic. We are definitely courageous. Indeed, we are family.