104 weeks

I wasn't sure I was going to write about it this year. I was waffling back and forth. This blog is personal to me, obviously, but I'm a surprisingly private person most of the time. I was going to write regular posts this week, but I don't think I have it in me.

This week sneaks up on me. I know the date, of course. But it's more than that - I think my body responds to the season itself, picking up on the tiny cues that let me know the day is approaching. Pumpkins and trick or treaters, the Santa Ana winds in the air, election ads running constantly. I find myself feeling restless and stressed and then the crying starts, out of nowhere. 

A partial list of places I've cried in the few days: in the grocery store, on the bus, at two different airports, in my office at work, in the car, in various bathrooms, over dinner in a restaurant, at home. I almost never cry, so it's shocking to me every time. It hits me randomly, and I feel the tension build up behind my cheekbones and suddenly there are tears. I hate this loss of control. I feel weak.

Two years ago, Dave had his accident. Last year, we had only just managed to get the physical injuries under control so that he wasn't constantly being sent back to the hospital - I wrote a little bit about our experience then, as the big healthcare debate raged. We were at the one year mark, and while we certainly knew that the brain injury was impacting our lives, it had taken a backseat throughout the recovery process because the physical injuries were immediately apparent, demanding of attention.

After that first long day of waiting, while the doctors worked furiously to figure out exactly where all the injuries were, they sent a resident out to talk to us. He was young, with bleached hair and ear stretchers. He was muscled and hardcore and I remember being relieved, because hardcore seemed like exactly what I wanted. Someone tough, someone willing to take risks. He sat us down and tried to talk to us about the various injuries. We wanted to know about the leg, about the bleeding, about his face. He kept trying to talk to us about a brain bleed that they hadn't noticed upon admission that had rapidly bloomed. We would go back to the other injuries, relieved that they had stopped the bleeding, that he might get to keep the leg. The subdural hematoma was just a speck, a tiny little spot of blood in the brain. It was hard to focus on it in the midst of everything else.

Two years later and that speck is front and center, long after it dissolved. We're lucky. Dave came back, he came home. In so many ways, he is still himself. He has his memory, he loves the same music, he has his bizarre sense of humor, he writes just as beautifully. And yet.

He is utterly different. A brain injury changes a person, in ways that are hard to predict or explain. Dave has no temper problems, no inappropriate behavior, for which we are incredibly grateful. He simply isn't Dave in certain indefinable ways. He remembers that he loves us, but the brain injury makes it difficult for him to think of other people, so the generosity and care that we'd come to rely on no longer exists. The love feels like an artifact, rather than an action.

Dave married my mom when I was thirteen, old enough that the transition wasn't exactly seamless. I have a father, and I adore him. My mom and my sister and I had been an independent unit for most of my life, and I was happy with it. But Dave brought so much joy into our home, unexpectedly.

He loved music of all kinds, including Nine Inch Nails, which instantly endeared him to me. He took us on camping trips to the desert and taught Dustin how to rock climb. When I crashed my first car (I was fifteen, sans learners permit, let alone a license, it wasn't my car, and I rammed it through an actual wall, leaving a VW sized hole in an apartment complex laundry room) I told Dave first and he helped me tell my mom. He got me an interview for my first real job, at his company (but in a different department) and when I landed it we carpooled to work every summer while I was in college and then for a few years after. When, while working on my thesis, I accidentally filled my entire lab with hydrochloric acid fumes, Dave is the one I called. He was so calm - How badly are your throat and eyes burning? Is there anyone else in the building that you need to warn? Okay then, I think everything will be fine.

I miss that Dave so much. I miss knowing that I can call him when I have an emergency. I miss his voice, which has a completely different tonal quality since the accident. I miss having him ask me questions about what I've been doing at work. I miss him loving me and being proud of me.

It's hard, this ambiguous loss. Dave is here, he is alive, and everyone expects us to be grateful. And we are grateful, but it's possible to be grateful and also incredibly angry about what you've lost. When someone dies, everyone around you understands the script. It is a tragedy and you grieve. When someone miraculously survives, it is a miracle and you celebrate. We aren't supposed to grieve because we had a miracle. We're supposed to be happy, joyful, overwhelmed. But it's unbelievably hard, seeing Dave walking around, taking care of him, hearing him sound almost but not quite the same, and then being hit over and over again with the realization that he is only partially here. It forces us to live with the loss, constantly.

So much of what we love about people is the way they love us. When that love is gone, or completely changed, it's hard to figure out how to go on. What we have left is the knowledge that he adored our family and that he needs our love now. We continue on as best we can, which means some days are better than others. We live with that commingled loss and love, trying to appreciate what we have left while somehow allowing ourselves to mourn what we'll never have again. Yesterday Dave carved pumpkins for us, just like he always used to. We ate dinner together and he told a joke and we all laughed. He didn't call me girl in his old tone and he forgot to hug me tightly before I left. I have to be okay with that. I don't waste time thinking about how things could have gone differently. There are a million ways in which it could have been worse and a million others in which it could have been better and you can say that about everything in life.

And I am learning. I have always loved control and plans. I like to make schedules and lists and try to find the right time for everything. It's humbling when you realize that everything you've planned can be changed in less than a second. It's taught me to value resiliency. I want to be a person who can set goals and move towards them wholeheartedly but is willing and able to change as necessary, bending without breaking. I am practicing doing my best and then letting go, because I can't control outcomes. I am admitting to myself that above all, above anything tangible I might be able to accomplish in life, I want to be a person who loves well, and who is loved, and who does things right as often as possible.

This all sounds sort of hippie dippy and I prefer to identify as kick ass rather than new age. So I approach it more like that, as a challenge. It's a process, and sometimes it feels like zen and sometimes it feels like I really want to hit someone, hard. I am a naturally anxious person, so training myself to focus on the process and not just the outcome is difficult. But I keep reminding myself that I am moving and changing and growing. This is hard, I am allowed to feel sad, but I'm also allowed to have joy in my life, and I do. I am going to figure out how to keep moving forward.

But I'm taking a break until next week, when I'm over this crying in public business. It's hard to feel kick ass when you catch yourself weeping in the produce aisle.