Friday, March 30, 2012

Still Loud and Too Close



So, it's been a while, specifically, 492 days, since I posted my last blog. In spite of the radio silence much has happened and yet sometimes it feels like nothing has happened. So, in November 2010, we here at the zombie cave were heading into the holidays and holding our breath for our lovely girl's recovery. I spoke about that way back here. Well, just out of the holidays, our daughter began having increasing occurrences of seizures. Our hope was that they would go in the other direction, but unfortunately, they did not. On some occasions she needed to be rushed to the hospital via ambulance and a few times she's needed to be hospitalized. In looking back at the abrupt end of posts to this blog, I'm reminded of how hard my family and I took the steps backward in our lovely girl's recovery.

This last August, 2011, we had a particularly difficult trial when my daughter came down with stomach flu and couldn't keep her anti-seizure medication down. As a result, she had some of the worst seizures she's had since she first exhibited the symptoms of the encephalitis that started all of this. She was hospitalized for a few days and some tests were run on her. What they discovered was that the seizure activity she was continuing to have was coming from the same region of the brain, and looked for the most part, the same, as when she first contracted encephalitis back in 2009. The sobering implications of this are that it is likely, from a medical perspective, that she will continue to have seizures for the foreseeable future, and possibly for the rest of here life. News like that forces a person to make decisions. The basic choices are whether to give up or keep moving forward; to live or die. That sounds simplistic, but its kind of true. For people who've never gone through something like this, that may sound ridiculous, maybe even naive or selfish. But here's the thing, I think more people relate to this than even know it.

That brings me to my tangent. Tonight we watched the movie, Extremely Loud & Incredibly Close. Its about a boy with Aspergers syndrome trying to cope with the death of his father who was killed in the September 11, World Trade Center attacks. The movie is powerful, well acted and emotionally intense. There are many layers to the story in how it depicts grief and guilt and loss shared by not just a family but so many other people who's stories weave in and out of the primary narrative. I recommend it on those merits alone. However, the thing that surprised me in watching it, is how emotionally connected I was to the 911 attacks after ten years. I was reminded of watching on live television a second plane crashing into the second tower. I was reminded of seeing, in real time, the buildings collapse, fully comprehending that thousands of lives were being extinguished, displayed on television in my living room, in a senseless act of violence. I was made aware that the grief and despair that I've felt since my daughter got sick in June 2009 have deeper roots than I could have imagined.

Previously in this blog, I'd written about post traumatic stress, in fact, that was my last post. Watching this film, re-experiencing my greif over this tragedy, brought to mind the idea that a huge audience of people around the world had the same experience I did. We all saw this happen. Humanity grieved on September 11, 2001. Maybe we never really recovered? We tried to fight back, through wars and protests and filling holes with things we can't afford. We keep trying to find someone to blame and we engaged in man hunts to destroy the faces that we associated with our grief. But it seems like we're still empty, still hurting and still unsatisfied, even after ten years. All the usual joys and escapes aren't making life more tolerable for millions of people. Living in the bay area, I've seen the extreme face of anger, frustration and apathy in everything from the Oscar Grant riots and Occupy movements to the jobless rate and current presidential contest.  Things don't appear to be driven by hope, as much as people would like to paint that picture. They seem to be driven by anxiety and fear and a desire to place blame somewhere. I totally relate.

At the end of the movie, what the characters are trying to get to, is the ability to accept what has happened and move on with living. That is hopeful to me. That's what my family and I have needed to do. That's one of the reasons I felt compelled to write this tonight. I hope that's something we as a country and as a world can do at some point. We can't bury what happened on 911, or in Iraq or Afghanistan or the Sudan, or in Haiti or Japan, or to our world economy or to the millions of people traded as slaves or dying of starvation, or the houses we lost or the retirement we watched disappear. That and so much more has happened in the last ten years and most of it has really sucked!

Wait. Check your pulse as I check mine. Is there something moving there? Yes, for now, there is. I'm not trying to be melodramatic, but, if we've got a pulse than we CAN be alive. It doesn't mean we are living, but we can live. I'm going to try, simply because I owe it to my family and hope is worth it. It really is. If all we can do is hope FOR hope, that's still something. If our hope is in something deeper, like a faith, awesome. See, the opposite of hope is despair. To despair is to give up. There is no life in that and nothing will subdue it. Its an empty well. In the film, the boy's quest to find the lock his key would open represents a kind of hope. It is his reason to keep on going. Although it ultimately proved to be a false hope, it was pure and real to him and got him where he needed to be to find real hope, peace and love. Doing things like writing this blog, making music and loving my family everyday, one day at a time, are the things that are moving me forward. My hope is knowing that we are not stuck or permanently defined by time or circumstance, but that we are moving towards something better than where we came from. Where we came from is very real and absolutely informs our journey. Where we're going is open to every, good, wonderful possibility in hope.