Sunday, June 23, 2013

The Great Unvitation

It is amazing that the most obvious and irrefutable truth of this world is also the one that no one really truly believes: we will die. One day. Any day. We say we know this, but deep down we don't believe it. (This deep, inner conviction that we are immortal is part of what comprises my testimony of the resurrection of the dead and eternal life. I realize that atheists' minds are turned the other way by this same innate belief, and I realize why, but I tend to trust deep in the gut instincts. Plus I have other reasons for my testimony, but I kind of enjoy this one.) We cannot imagine actually not existing. I know I can't.

I also couldn't, didn't, imagine this happening to my parents or sisters, or kids or husband. But it will, hopefully in the case of my kids and husband, after I have passed on. I used to laugh at parents at the zoo busy photographing animals and not their kids, but I did kind of the same when I busily recorded my kids but not my parents with them. Because my dad spent really an extraordinary amount of time with us, he happens to appear in many photos and videos, for which I am very grateful now. I will need them to help my kids remember the third most important adult in their very young lives.

My dad taught Andrew to ride a bike and swim. A week after his diagnosis he came over one evening determined to teach Will to ride. It was very inconvenient--we were struggling through dinner and we had homework to accomplish, but I realized that he just really wanted to be the one to teach Will, too. To leave that small legacy there, as well. Will was uncooperative and became increasingly belligerent until the darkness of sky and attitude forced us back inside. I felt bad that it had not worked out, but I was also happy to get back to the business of putting them to bed as soon as possible. There would be another day. Only there wasn't. The weather after that was always too cold, or something else happened, and my dad steadily worsened. I can't beat myself up over every moment not perfectly put to max use, because we really did have a wonderful life with my dad. But I realize that he felt a deeper sadness that night when it ended up a bust.

The last week has seen huge deterioration. We are now preparing a downstairs room to be my parents' bedroom. I hate the thought that he will come down the stairs of a house he lived in since 1978 and just never go back up again. It is such a small, obvious thing, but I guess it stands in for a millions things and breaks my heart again to think of it.

Right now there are several people I know who are dying, or fighting for their lives against extraordinary odds, who are still young. Two moms in their 20s, one of whom discovered her brain cancer during her pregnancy a few months ago (her first), and had to deliver early so she could begin treatment. Their odds are less than 1 percent. Another girl, younger than me, who lost her battle with cancer two weeks ago, leaving behind three young kids. They would have traded what my dad is going through to face their battle at 70 after a healthy life. My dad would prefer his current illness to missing out on the last 40 years.

I often hear people in these situations say they don't want to miss their kids' high school graduations or weddings or grandkids. I used to be rather tone deaf to that complaint. I mean that I thought that I understood what they were saying, and I sympathized, but I didn't really get it until now. I used to think that the dead were happy, waiting patiently for those they loved to join them. But now I feel like they must miss us the way we miss them. And there has got to be an element of feeling left out, missing out on the huge milestone moments of those they love. If something happened to prevent me from attending Will's preschool graduation, I would have been really sad and felt deprived. I already did feel deprived when, after Claire was born, I reacted to the epidural and experienced extreme shakes for a couple of hours and was unable to hold her during that special quiet alertness newborns experience. Brigham held her, but it is painful to me that I did not.

What would it be like to face truly missing out on every single moment, big and small? To be entirely left out of every second of the rest of my family's lives? Because the truth is that while we never forget those we love, we do move on. We have to. They want us to and we should and we do. And I see now how it feels like we are betraying them in a strange way. And how left out they must feel facing the prospect of leaving the party before it is over, and for some, just as it is only beginning.

Life is so wonderful and we can fill it with so much. My dad loved life. He always said that everything after Vietnam he considered bonus years, and looking back at how he lived I think that it also influenced him to seize life, enjoy it, really make wonderful memories. Despite his constant leg pain due to wounding in Vietnam, he never let things stop him and he never complained. He loved the beach, he loved going places, he loved good food, so long as it was steak or a hamburger and not highly seasoned, he loved regular ordinary moments of going on walks down Old Falls Rd and sitting up late talking with us over a fried egg sandwich. He loved traditions and routine: McDonalds every day at 10:30, cleaning the whole house on Wednesdays ("My Cleaning Day," he called it) while listening to country music. Monday nights eating out for FHE, which later evolved into eating out all the time after we all left home. He forged such a strong relationship with the workers at our local Fuddruckers that he bought one guy a wedding gift. He loved TV, and I looked forward to watching Law and Order with him when I returned from my mission. The man loved candles for goodness sake and burning them made him happy. He is probably the only man who loved owning a Scentsy.

He was always up for anything. He took us places, visiting all the historic sites, especially battlefields, around. If anything, he was even more this way with his grandkids, showing up at my home to take them to ice cream and the park, preferrably by himself though if I really wanted I was invited, too. He took Will to his first movie in the theatre, Up, during my Ob appointment when I found out Porter was a boy. He organized the yearly trip to Kings Dominion amusement park. He wanted to take the grandkids alone there, too. He was in attendance at everything my kids did, and always so helpful. He showed up to help out with everything, down to the autumn before his heart attack when instead of just delivering his leaf blowers to us, he stayed and helped with the yard work. And he was so happy doing it. I remember looking over and seeing my dad laughing with the boys while they gathered sticks. He was just always there, and always cheerful. I realize that he was doing all of these things with an eye towards purposefully building a relationship with the kids and creating memories. He lived very deliberately and thoughtfully. His was a life very much examined. He always thought he would die young, pointing out that the men in his family did, but he was such a force we just didn't believe it.

I am so sad that my dad won't know where the boys go on their missions, or which sports they settle into. He won't be there to be a calm voice of reason when they may need it, that extra encouragement and safe place that he could offer them as a grandfather, removed from the parenting role. He won't know who they turn into as tweens and teens. Brigham wondered who would be able to get them on social security disability when they needed to be government dependent after college. (Dad, as Bishop, mastered navigating the social security benefits program and got everyone eligible off Church welfare and onto government, which is kind of hilarious.) He won't know Claire at all, which is especially sad because he really wanted to have another granddaughter. He wrote to me right after she was born that she looked like me. I need to write that down because he has not otherwise remarked on her very much; he just cannot.

So I now see death as a huge unvitation. You just leave the party, and it is a big missing out. What a lonely, desperate feeling when there are things you still want to do, memories you want to be part of, people you still want to be with. I have taken up reading Loren Eisley, one of my dad's favorite poets, because I initially thought it might be nice to record myself reading his favorite poems to him to listen to in his bed when we are not there, since he can no longer read. But after looking them over I feel they are all just too sad and as much as he loved them and loved even tapping into that universal melancholy, right now I think he has too much sadness and what he needs is some light and laughter. I think I understand my dad even better reading them, though. I feel like if he could speak, it would be the things Eisley says. Even Eisley's tombstone felt appropriate to dad: "We loved the earth but we could not stay."

I also really like this:
"We have joined the caravan, you might say, at a certain point; we will travel as far as we can see, but we cannot in one lifetime see all that we would like to see or learn all that we hunger to know."

That image feels exactly right.

Eiseley, incidentally, was the originator of that Starfish story the church made into a movie. It actually happened to him and he wrote an essay about it. Now I don't feel so silly for the chills I got watching that movie in seminary.

When he was three, he and his dad watched Halley's comet blaze across the sky. His dad told him to look for it in 75 years. This is what he wrote, and I cry every time I read it:

... somewhere in the remote darkness I could sense Halley's comet turning on its long ellipse. Hurry, I half formed the words. Hurry, or I will not be here. I did not know why I said it. Yes, I did. I wanted to return to that bare world of 1910, held in my father's arms -- lay back and vanish. Pa, I said. There was no sound from the dark.
— The Lost Notebooks
Eiseley never did see it--he died before the comet came back. Right now there is no sound coming from the darkness with my dad. But I know someday there will be no no darkness at all, or silence.

Sunday, June 09, 2013


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.

they will see us waving from such great heights

"Come down now," they'll say
But everything looks perfect from far away
"Come down now," but we'll stay.

I am often overwhelmed by the significance of pretty mundane and obvious thoughts. My most recent one is this: my children are separate people from me. They have their own lives, marked by private thoughts and feelings and relationships that are real and not fully accessible to me. My first drift of this was when Andrew was 3 and returned home from a playdate, unwilling to divulge what he and his friend had done because it was "a secret." "A secret because he told you it had to be, or because you just want it to be?" "I just want it to be." And a little smile.

I am feeling it again now in similar, otherwise banal moments, like when I drop Porter off at his little preschool and watch him walk hand in hand with a teacher who knows him and loves him, away from me to a separate activity I won't totally know about with people who know him on his own terms and not through me. He talks about Miss Jess and Miss Willa and Misbah in a casual way that underscores that these people populate his life in a way they do not mine.

Maybe these obvious reflections are meaningful to me especially now as I take care of a new baby, whose every moment is totally known to me, who has no life or identity that I am not part of or do not witness. It won't be long before this is no longer true.

I have been thinking about my kids' relationships with each other, and how those are at least as important right now as is theirs with me, and how over time those ties will become more important. That one day they will only have each other. As strange and sad as it is to watch the natural and appropriate development of separateness slowly progress, I do love the idea of the boys doing it together. When I was looking at these photos of them climbing trees, the lyrics to the song above came to mind and I liked the idea of them up there together, without me. Even if I am on the outside, part of the "they" urging them to come down now, I am gratified that they are resisting me, experiencing a minor adventurous rebellion, together.