The Desperate In-Between

It's Easter Saturday. For my family, that means its the day we celebrate the secular Easter. It's about easter egg hunts and chocolate bunnies and gifts in baskets with fake grass. We save the sacred for Easter Sunday. That's the church day, the resurrection day, the day we ascribe the more profound meaning to. Easter Saturday is, according to the bible story, that in between time.

The bible doesn't say much about those in-between days. After Jesus dies on the cross, he's prepared for burial and then the story cuts to the third day and the story of his rising. We know that most of his disciples freaked out and hid for fear of being arrested. Many of his inner circle bunkered down in a place called the upper room waiting for news. They weren't waiting to hear about Jesus rising from the dead. More likely, they were waiting to hear when the warrants for their own arrests would be issued. Its a place where a burning, faith driven enthusiasm collided with a harsh reality that seemed to obliterate that faith. The faith of these true believers had already become increasingly strained by Jesus' own predictions of his death and a noticeable falling away of followers not willing to accept some of Jesus' hard teachings. In Jesus' presence, these folks had confidence, vision and hope. Now, without Him, they were isolated, desperate and afraid.

The desperate, in-between times are those that challenge every fibre of our character. They are the times that change us for either the better or the worse. The image of a tightrope walker with no net comes to mind. Where, it seems as though everything is at stake and delicate and you will either fall into oblivion or somehow make it to the other side.

Recently I've been thinking about my dad. He died in 2009, just a few months after our beautiful girl contracted viral encephalitis. He had been told by doctor's that he had very little time. In spite of this, the day my daughter had to be taken into the hospital emergency room, he managed to meet us there and encourage us. He was going through his own, desperate, in-between time and yet he came to hope with us for the best. When our lovely girl was released from the hospital about a month later, he was on the phone, encouraging. A short, couple months later, we were able to visit him at his house. By this time, he was on hospice care.  In spite of the pain and uncertainty I know he was dealing with, to us he just shared his happiness that our daughter "made it" and that he told us she would. I don't remember a time where my children bonded more with my dad than those last days. A few short weeks after this his illness took a hard turn and he passed away.

For all the differences I'd ever had with my father, how he lived those last months of his life showed me glimpses of something really great. A life lived well in the he desperate, in-between times.

I wrote a tune that is inspired by my dad in this time called "Fade To Black". Its about making a choice to keep hoping and living or fading to black which is a metaphor for despairing or even dying. Its about being in that desperate, in-between time. This verse is my dad in those times:

Might think that this ole man
has seen some better days
hit his stride back when the big bands played
seems like all this bad news
sent this train off the tracks
long as you've got a few more miles to go
don't start to fade to black

Over the past few years, we've spent a good deal of time in that place. Waiting in emergency rooms, riding in ambulances, family events interrupted with seizures. Dreams interrupted for a teenage girl. Life interrupted on an almost regular basis. So Easter Saturday; family time, bunnies, candy, egg hunts. Escapism? Material Excess? Yes, maybe. But, also, simple attempts at practicing what it is to live well in the desperate, in-between.

Zombie Out!

Tightrope image © Copyright Alexander P Kapp and licensed for reuse under this Creative Commons Licence

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.