It is his identity as a marine officer that he seems to most want the people around him to know, to remember about him. I think this is because he feels those qualities that made him such an excellent soldier are seeping out of him like blood. The strength, leadership, independence and competence he brought to everything he ever did is trapped inside of a body that is diminishing in front of us every week.
After his heart attack last May, he made a very slow recovery. He was moving more slowly. A natural and comfortable public speaker, his talks in church became more halting, embarrassing to him. He seemed to say less to us, too. Even though I live less than a mile from my parents, I kept up my old long-distance habit of talking to my dad every day on the phone as I drove. The last conversation was in August. I didn't know it then, of course, and I am glad of that. It was marked by many long pauses, which I attributed to thoughtfulness or hesitancy to give a quick answer. He told us at the beach in August that he was feeling tongue-tied. We began to suspect the medication he was taking was having side effects.
He continued to decline. His speech became slurred, stroke-like, but stroke victims' speech impairments plateau, even possibly improve, while his steadily grew worse. There was no stroke. Still, life kept happening. Will and I were at Hopkins every day for 8 weeks, we went on a trip to Las Vegas, there was Thanksgiving to plan, then Christmas. It was right after Christmas that he got the diagnosis: PSP. Progressive Supranuclear Palsy, a degenerative brain disease that robs people of speech and mobility. Most sufferers die from choking, pneumonia or the trauma of a fall. It is extremely rare and not much is known, aside from that there is currently no treatment and no cure. When he and my little sister who had accompanied him to his neurological appointment came by my house that night to gather for a dinner out and told us the news, none of us knew how to react. I didn't really understand what PSP meant. My dad, in his typical organized fashion had printed out copies of a description of the disease off a medical website to distribute to each of us. I read it, but the words somehow did not register through my disbelief that anything truly horribly could happen to us.
Up to that point, I had seen my dad cry possibly 5 times, which meant that I had seen him become teary. That night he sobbed. I can barely stand to remember. We all froze, paralyzed by some perverse combination of not wanting to acknowledge his sobbing so as not to embarrass him, not wanting to accept the diagnosis, and old fashioned lack of practice. My sweet boys, however, did not hesitate. They each ran to him, even Porter, and threw their arms around him and stayed there. "I'm never going to get better," was all he said. I wish writing this down could take it out of my brain.
He can no longer speak at all. He swallows with great difficulty, too, and has lost significant weight. He communicates with a thumbs up or down, and uses a writing pad, but this last form of communication is not easy. His thoughts are in his mind, but it is like he has to translate them to a foreign language to get them out. I miss his smile the most.
His service as a marine was probably the most defining experience of his life. He often thought about it--or, more accurately, re-hashed every detail of his experience, on a regular basis. Maybe 5 or ten years ago he felt he hit upon an answer to a question he had wondered about since 1966: What was it that the Corps had been looking for in a man? Why had the training been so brutal? For decades he had thought that the insults they had hurled had been sincere, that some of the hopeless training assignments mysterious.
"I think I know now," he said. "They were not looking for the smartest man or the strongest or even the bravest. They just wanted men who wouldn't give up. They gave us tasks that were simply not possible to complete, and it was to see if we would continue to try despite its incontrovertible impossibility."
My dad is someone who does not give up. I do not mean by this that he thinks he can fight PSP and win. He is unflinchingly realistic about everything in life. He thinks he is a pessimist because he does not Pollyanize anything. But he is possibly the most optimistic person I know, because he accepts reality and forges ahead with a careful, thoughtful plan to achieve the best possible outcome, even when the best possible is awful. People who mistake romanticizing and pretending for optimism don't know what it is. And while he accepted before any of us did that he had a terrible and irreversible condition, he has done all he can to hold on to himself. Despite his extreme limitation and sufferings, he still does everything he can to be a part of life. He does not miss our boys' sporting events. He sits through every cartoon movie night with the kids. He even gets out on the trampoline to play. He cannot jump, but he pretends to be that same water buffalo that wore out the knees of the green cords I picked out for his father's day gift when I was three.
One of the most remarkable aspects of human nature is our ability to adapt to new situations. Often I am able to go into auto pilot mode about this. My dad is sick. He can't talk or easily control his facial muscles. He is feeble. He is living his absolute worst nightmare. It will only get worse. Okay. But sometimes I let myself think of him as he was just months ago. Could it really be? Just months. And I am floored.
I am trying to find anything positive I can out of this horribleness. I am blessed to have had such a wonderful father, and to have had him for as long as I have. Most people with PSP are hit at 60; my dad got an extra ten years. He got to meet and develop the most wonderful relationship with my children. And lastly, while it is an awful way to be reminded, it is essential to remember that life is short and in the end, there is only love.