Emily refers to this as my peculiar ability to take a perfectly good thing and crap it up.
I've been tinkering a great deal at night when I should be sleeping but cannot. Right now my dining room table is full of screwdrivers and soldering irons. I have taken apart and rebuilt at least two guitars, one digital camera, one guitar effect pedal, and I have constructed another guitar effect pedal from scratch. I am happy to report that all of the aforementioned articles are now in working condition, and some have seen considerable improvement.
The point of all this is that everything in our lives has seemed so out of control in the past month and a half that I guess I've been retreating to my tinkering as a way to feel in control of something. Soldering tiny resistors and capacitors to a circuit board has given me some measure of comfort and normalcy.
I love to know how things work, and when they don't work I like to make them work. This is what is so frustrating about Emily's condition. Although they have good ideas from clinical observation, no one knows just what it is or how it works. GBS is so rare that there really isn't a lot of money really spent studying it, and so treatment is largely a matter of making sure things don't get worse and hoping they get better. It drives me crazy. I wish there was something I could do. This has taken our lives apart and I just want to be able to put it back together - to put Emily back together - but of course that's not how it works.
I assume, however, that God is a great tinkerer as well. If I were God I don't know how I could resist the urge to tinker with creation from time to time. Perhaps tinkering is the wrong word, but I do believe that God is present even in Emily's sickness and slowly (indeed, too slowly for my liking) restoring her to health. I believe this because God incarnate in the person of Jesus Christ could not resist the urge to heal those whom he encountered on his way, and these healings tell us a bit about God's nature as the great physician.
The prayer following communion in the United Methodist church reminds the church that we give thanks for the sacrament of communion in which God has given God's self to us.
The bread and wine become, for the church, the body and blood of Christ so that the church might become, for the world, the body of Christ redeemed (read, "healed") by his blood. It is an act of taking something whole, breaking it, and through some holy mystery reconstituting it through the people of God. It is a supreme act of tinkering.
This, I perceive, is the same cycle of wholeness, brokenness, and restored wholeness that we are currently experiencing. We are glad to be moving toward that third stage, but we continue to pray that this holy mystery would hurry itself along.
Today Emily was off of the vent two separate times, 1.5 hours and 1 hour respectively for a total of 2.5 hours today. The second time she was off the vent she was in a special chair and I was able to wheel her all around the halls of her floor so that she could get outside of her room for a bit. For her it was stressful and exhilarating at the same time. For me it was nice to go on a short walk with my wife. She continues to grow stronger by imperceptible increments, but the sum is greater than the parts, and she would appear much improved to someone who had only seen her a week ago.
Ever onward.
