I often read about PALS fighting the battle and being told not to give up. Every time I read that, I feel a little confused, and now I understand why. That view assumes a war. And wars can be won or lost. Too often, people dealing with ALS think they're in a war that they're bound to lose. But that's not how ALS works. Normally, life in middle age is a fairly comfortable ride, with no idea how long it will last or how the end will come, so we ignore that.
When I first read EKR's On Death and Dying decades ago, I was elated that someone would bring such an important subject out into the light. But I was skeptical of her methods. Indeed, now there is much criticism for her unscientific approach. The 5 Stages of Grief taught in Psyc 101 are good food for thought, but they're certainly not the final word. You might find a book on grief to help. To be honest, I flipped through some books at the bookstore, but never actually took one home.
I was raised as an only child, with no concept of family and terrible social skills. Yet after my wife died, somehow I had to be a single dad.
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.
It's been four years since my PALS Krissy passed. That was the hardest physical work I've ever done. Caring for a paralyzed person for months is a full time 24/7 job full of life-threatening surprises. It was REALLY tiring. I sometimes fell asleep in traffic. Of course, now I think of Krissy all the time. During the first few weeks, I cried or teared up at night. Now I think mainly of the good times. There are no more tears. Just smiles. So here's what happened after it was all over:
Almost cut my hair... The black ladies I meet get so excited and exclaim 'can I touch it?' And I always bow my head to their hands. They seem to appreciate a big head of silver hair. Most men cut their hair so short these days, it's like they're all Detective John McClane. But I'm the only one whose roots are true to my roots. I saw the original Earth Day; the war was over but the hippies still needed something to complain about.
Nearly three years have passed since my PALS Krissy passed. We've been fortunate since then, as though God is giving this atheist a reward for being such a good CALS. We think of her often and her ashes are on the mantle next to her favorite Tigger and photo, but we don't observe any services or anniversaries. We carry on without her. I've attempted dating (rarely) but there is no one who measures up to the standards she set. So I'm not highly motivated to find a new wife. Maybe when both kids are off to college I'll change my mind.
Beatles always get me off to a good start. But what's even better s the old tune, 'It's a Beautiful Morning.' I also like 'who's trippin' down the streets of the city, smiling at every body she sees...' It's a good morning. And excuse me if I don't whine about ALS. In fact, let me say that the disease has done really good things for my family.