Wednesday, March 7, 2012

Quixotic


Every once in a while, I’ve been asked by friends to go and speak to a friend or a relative who is facing a new diagnosis of cancer (or other serious/terminal diseases) or people who have gotten an unexpected downturn. I frankly don’t know what to say other than keep living like you mean it. Thankfully most of the time I’ve just had to listen. It’s confused more than a few people that I’ve kept doing things like training for the marathon while waiting tests, putting off surgery to it. While most of the feedback directly to me has been about how people like that, there has of course been some question as to why I don’t just take it easier or wait till test results come in before getting back to training. People have said, “there’s no one to impress anymore.” Others have pointed out that a year ago I didn’t want to be defined by this… I am not entirely defined by this but it’s part of me. It's demonstrated if by nothing else things that yesterday while I waited for today’s neuropsychological results I got Kiana Oreo ice cream to celebrate 100 years of the cookie but someone else had to drive me there because I am currently not allowed to drive due to medical restrictions.

There are times where the dark thoughts enter, where you become aware of the fact that you may be tilting at windmills, chasing impossible dreams. But in my daughter’s room there lie some wall words that if you aim for the moon, you might land among the stars. I have a lot of bad qualities but pretentiousness isn’t one of them and apparently self-awareness is one of my good ones. The neuropsychological results are in of where are we are at a year later. Some things are better, some things are worse but “the cognitive problems that Mr. Leon describes in his day-to-day function are very consistent with…test findings.” Both that sentence and the fact that, even if it was just a short notice before the seizure, I saw it coming. Somehow, in a situation where you feel out of control of your own mind, it’s comforting to know that you’re at least clued in.

In that same vain, of all things, the guy who runs tournament, might have gotten left by his wife for running too much of the show and is getting highlighted by Livestrong for having gone and picked his own doctors and not frozen from the diagnosis, it gets pointed out by one of those doctors “at times he seems to be trying to control the flow of testing.” In the end the guy who wants to run the show can’t control one of the biggest factors of his life but that doesn’t stop me from trying which has had some mixed results. The right side of my body is better than it was post surgery but not back to what it was presurgery with that slight weakness on the right side of my body and tremor in my right hand now actually measured. I am calmer in personality than I used to be but my anxiety about life and death is higher. My depression is less because apparently I’ve more carefully resolved some things that happened after the surgery. My IQ is holding in the 99th percentile, my learning new things “proceeds less efficiently than might be expected for an individual with his intellectual ability.” I had actually noticed all of this, why I finally got a smart phone and writing more things down but now it’s measured.

The rehab apps and exercises have gotten me to hold ground or improve on most of the areas but there are still some losses. When that anxiety is up, I do think of characters like Don Quixote living out crazy adventures because something went wrong in his head. In the book version, he ends up giving up on the crazy vision, renouncing romance even when he’d helped other people feel better about their condition in life through that craziness. In the musical, he still dies but does so singing not having given up the craziness. Maybe training for a marathon while doing medical tests is crazy, maybe thinking that the 100th year of the Oreo is a big deal and that your daughter should note it is absurd, maybe. But if sanity is sitting on your couch and watching TV is sane or not painting your toenails with a 5 year old gir is 'normal', then I’m glad my mind is screwed up. I am an odd guy with an odd tumor (3 in a million) that is in the incredibly small percentage of single dad’s being the primary guardian (8%), the incredibly small percentage of people who run marathons (less than 1%). Here’s hoping that I get to be one of the one that beats it, oddly enough actually higher percentages (12% nationwide, 18% at Duke). But if I don’t… here’s hoping I go down like the singing Quixote:

This is my quest, to follow that star ...
No matter how hopeless, no matter how far ...
To fight for the right, without question or pause ...
To be willing to march into Hell, for a Heavenly cause ...

And I know if I'll only be true, to this glorious quest,
That my heart will lie will lie peaceful and calm,
when I'm laid to my rest ...

My body is sore still. My mind has issues. But I woke up from one misfiring on the other to people I loved and telling them that so here’s hoping that heart holds steady even if that idea is quixotic.

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