One of the amazing (and strange and sad and totally engrossing) things about digital images is that you can take 11,821 of them with you. Today is my Dad's 90th birthday, and I've just spent a good part of the evening looking back over the past seven year's worth of images. This picture is from June 2003 - Oliver had just turned one, and it was to be a good six months before my dad had his accident. Photographs are weirdly cruel to traumatic brain injury victims, and the oddly distant, preoccupied look in my dad's eyes in post-December 15, 2003 images haunt me too much. So this is the picture I'll use to celebrate his birthday here today. We called him at about 8:20 a.m. his time and after the nurses picked up the phone, we had a nice, if brief, phone conversation. The kids said hi and happy birthday (in French) and he answered and I spoke with him for a little bit and that was it. At some point, I landed on the understanding that "everything registers, but nothing matters." This is one of the deceptive emotional tugs of brain injury - he understands everything, so why can't he care? But at the same time (I always have to say) why should he care? He's 90 (!!!) with a brain injury. We'll see what happens in this post - whether it will be more about my dad or about traumatic brain injury. Writing about my dad with traumatic brain injury is still just too sad.
It's pretty stunning having a 90 year old father. I think that it's some kind of record for his family. If there's one thing my father has, it's a strong will, and (but what do I know?) it seems to me that at a certain point, will has as much to do with it as health. We had a soon-to-be-neurologist friend back in Chicago who loved old brains - said they thought differently and that there was wonder in that. We co-authored a teeny tiny short article on the phenomenon of spätstiel (the late style of artists). Rembrandt, for example, painted very differently at the end of his life than at any other time: the humor was more biting, the emotional thrust of the paintings trickier to pin down. Our friend found the older brain in its different operations as fascinating as most people find the infant or toddler brain. I've tried to keep that in mind, to go with the flow of my father's thinking, to be fascinated (à la Oliver Sacks) with the twists and turns of his mind. But very often, emotions overtake fascination.
What I hope is that I don't remember my father as a brain-injured person. That sounds weird, I know - why not accept what's happened and go with it? love him just the way he is now. I do, but there are many things that make that difficult: the cruelty of his personality changes, the unfathomable emotional distance, the tragedy of his changed state. So while I love him now, I hope that over the years, the memory of him before the brain injury comes back and wins my memory of him. These past seven years have taken a toll not just on memory, but on identity itself. In those bleak six weeks when he didn't know his own name, I used to ask Mac "But where is my dad?" I still ask it today. He comes in flashes, and then fades away again. Sometimes it's the strength in his voice, other times a certain gesture. It's like getting reception through static - every once in a while the picture is clear, and you just wish so much it could stay that way.
OK - now I hope that you don't find me morbid, but I've been following the blog that the family of Dr. Joseph Leahy is writing as they track his recovery from the brain injury (and more) he suffered when a fellow professor shot he and five other colleagues during a faculty meeting five weeks ago. They are an eloquent and inspirational family and I'm grateful that they're chronicling the long, long journey that is recovery from brain injury. I read many books at the beginning, like Where's the Mango Princess? by Cathie Crimmins and they help. You don't feel so wacko for wanting such strange things, for hoping for such impossibilities. What's comforting and strange at the same time is how absolutely familiar everything is: the kinds of talks the doctors give, the moments of lucidity that we all want to ride for a long time, but which are quickly eclipsed by returning confusion; the need to think progress is, well, progressive, but in fact it happens in fits and starts and you don't know which way you're headed anymore; the tremendous love and hope that you feel because you just want everything to be all right; and above all, the fervent push for metaphors that somehow make what's happening make sense: your dad has all his marbles (this was said to us), but they're scattered everywhere and he's working to get them organized; you have to think of his mind like a deck of cards (this on the blog) and the cards are everywhere and he's got to get the back into a deck; it's like a television whose reception is bad; it's like a dance, two steps forward one step back; it's like your dad is in a foreign country, having to learn all of the rules of everything from language to society all over again.
I think that what I'm trying to say tonight is that while I know how to write about my dad and his incredible, rich, wonderful life, and while I know how to write about traumatic brain injury and its powerful hold on life, I really don't know how to write about my dad and his brain injury. I still (after all this time) resist it defining him, even though it is now who he is. I still (after all this time) can't embrace the "new" dad, because I miss the old one so much. And (the sad truth) there's been a lot of ugliness in my dad and his brain injury. The kindest man ever, the "prince of a guy" as my brother described him, turned on all of us at one time or another. My mom got the absolute worst of it, as so often happens to the closest loved one. Watching her rebuild her life now that dad is in a nursing home is cause for hope, even confirmation that life can go on after brain injury. It's not easy, though. It was and remains inconceivable, the things he said - they were just things said, but they were emotionally real. Forgiveness is automatic since we know that he doesn't mean what he says (how many times has he denied ever saying those things) - it's more about letting go of it, forgetting you ever heard it, not allowing yourself to compare the two people who (somehow, inexplicably, and yet verily) occupy the same body and use the same gestures and have the same voice.
Part of the reason that I can't embrace, let alone celebrate, the reality of my brain-injured dad is that it haunts me to think of what he thinks about now. He whose mind ranged so freely, whose curiosity took him literally all over the world, whose incredible courage and will pushed him to take incredible chances. I know that he thinks of North Carolina (brain-injured people tend to want to go home again, to where it's safe and life is predictable), and there have been times when I've shown him some of his pictures which I now have at the office, that he's remembered Cuba and Hong Kong and Sri Lanka. I have so many things that I could show you, that we could talk about from his life. I think that's what gets me, the incredible, unbelievable richness of his life. And the numbing silence (emotional, intellectual, physical) there is now.
So why can't I just let my dad be silent? He's 90 years old! He's tired! Why can't I just let it go? It's because I want to hear him tell a long, loopy southern story one more time. It's because I want to hear him talk about Paris in 1948 one more time. It's because I want him to tell me about why he carried a copy of Shakespeare around with him throughout WWII. It's because I want him to tell me about Bombay (as it was called when he was there) in the wet season. It's because I want him to tell me about meeting my mom for the first time. It's because I want him to marvel at the world the way he used to, instilling curiosity in me. It's because I want him to tell me what it was like to live in new York in the 1960s. It's because I want him to tell me about visiting the sites where his brother fought in Belgium. It's because I want him to tell me about the first painting that he bought. It's because I want him to tell me about what it was like to have children at the age of 49 and 52. It's because I want him to tell me about reading Ben Hur when he was a kid. It's because I still have so many things I want to ask him and talk to him about. It's because I miss him.
If I stopped and listened, I bet that I would be amazed how many times a day my dad comes up in conversation with the kids. They, no surprise, are where I should look more often. They've always known him as brain-injured and they completely accept him for who he is. They don't ask anything from him emotionally, and yet they do indeed love him. They were completely excited to call him this afternoon. They spent time and debated amongst themselves what birthday card to get him (a red velvet frog won out, "so he'll notice it" said Iris). They go with me to eat dinner with him at least once a week and tell him stories and exploits. They ask about him. And they'll keep asking about him because his life touched on so many things they have yet to discover. It's incredible that my dad is 90 years old. It's incredible that Oliver, Iris and I think even Eleanor will remember him - his room, the pictures we've put up on the walls. And the stories above all. 90 years worth of stories, including a messy, tangled chapter at the end. But only including, not determining. Happy Birthday, Dad, I love you and I miss you.
2 days ago