"There's only one hard and fast rule in running: sometimes you have to run one hard and fast."

Wednesday, August 18, 2010

Writing about not writing

When I started this blog, the intention was to get information about the Upper Midwest Trail Runners out before the official website was up and running and then to make it possible for members to find each other on the internet (that may be taken over by a facebook page soon). Then I wanted to discuss my foray into trails and ultramarathons and what I was learning and that has led to a number of memorable race reports. Lastly, I always thought I had a book on training in me - and now, with two more posts written (but not typed), I've done that - making the posts searchable won't take long. As I'm not really racing or training any more, the blog is winding down and I'm turning my focus in another direction.

I used to write. I burned everything I'd written at one time and I don't think the loss was that great. What was dawning on me was that I was about to outlive all my favorite authors, most of whom were suicides and that had me thinking that deep introspective writing might not be a good idea for me. I've started writing again, sporadically, a bit rusty, and the writing of the blog may have something to do with that, as the standard's pretty low for writing quality on blogs; it kept me thinking and putting the thoughts in some semblance of order and then typing them.

The problem is that the things I want to write about, I just don't seem to be able to write. Here's an example:

I've a fascination for rare genetic diseases and might've made a good diagnostician, had I gone that route. Because of this, I've encountered some things that have had a profound effect on me. One day at the University of Minnesota hospital, I saw an infant that had a connective tissue disorder (epidermolysis bullosa, or something like that); he was missing the stuff that anchors skin to the underlying tissue. It's very rare and many children who have it don't survive childbirth. Those who do survive usually don't live long, as every movement causes the skin to rip. The boy's mother was unable to nurse him, to change his diaper, even to hug him, as everything caused his skin to tear and caused excruciating pain. The poor baby's life was just screaming in pain until he was so tired he fell asleep and then upon moving, he's hurt himself and wake screaming again.

It was the most horrible thing I'd ever seen. It caused me to have a crisis of faith, as I couldn't see how anyone could make claims of a loving deity that would allow this to happen. It was awful to think that there was nothing to do but see the child suffer.

Then I saw something even worse. I saw the boy's mother praying that the child would die.

That image has haunted me and I've tried repeatedly to write something that would do it justice. I haven't succeeded so far.

The reason I'm mentioning this is actually good news. The boy is now a toddler! They tried an experiment with stem cells and it appears that his body has slowly been developing closer to the way it should.

I wondered how anything good could come out of such a situation and I was trying to force something good to come out of it as a work of art - and then a miracle happens instead.


Glaven Q. Heisenberg said...

Not to, uh, piss on your miracle, but ... to piss on your miracle: This, to me, doesn't let Old Nobodaddy Teh Lovin' Deity off the hook. Why'd he create that awful disease in the first place? No disease, no need for a cure for that disease. None of the disease's attendant pain, either - for child or mother.

This simple logic seems to escape both Teh Loving Deity and those who need you - need everyone - to believe He Loves You.

SteveQ said...

Point taken. The miracle actually occurred within me. God's got a lot to answer for....

Lauren said...

I'm with Glaven. You doubt faith when a child is born into pain, but when science develops a possible solution, the faith comes back again. It is a heart wrenching story though. I hope he is able to live a full, pain-free life.

Anonymous said...

You're retiring from blogging again? You're the Brett Favre of the blogosphere!

joyRuN said...

I can't work the peds, NICU, or ER for that reason - I can't stand to see children in pain.

I've destroyed things I'd written before, usually at the moment I re-read them & cringe. A few years later I usually regret destroying them, not because I think the quality's gotten any better, but because I miss having something that's captured my mindset/thoughts at that particular point in time.

sea legs girl said...

I think you DID just do the situation justice. At least it brought tears to MY eyes. That's the great thing about blogging: We get a chance to write about what it important to us.

No loving deity would create that. There are millions of examples of what no loving deity would create. Yet we believe. But how can so many wonderful things come out of a life where really everthing should go wrong? There is no reason. And that's why we believe. In something.

Samantha said...

I think that's the story that I just read about in the paper. I didn't realize it was something so terrible, the paper didn't do the disease justice.