Sunday, March 13, 2016

Deus Ex Machina

Take it from a guy with a damaged one, memory used to be a thing that was all alone in the moonlight, where you dreamt of the old days and thought life was beautiful then. Then humanity  got more efficient with writing, then drawing, then photography. Now in the modern age of social media, remembering anniversaries or birthdays has gotten easier as we get literally prompted to it. However even with a scarred temporal lobe and a not quite there hippocampus, there are days that despite having very little recollection of them, they are still unforgettable.

Just a few days ago it was 5 years ago since brain surgery. I don't recall honestly anything after 'waking up' but the humor coping mechanism was there before the surgery with the joke of "I'm going to give you a piece of my mind" to the neurosurgery team about half an hour before. Before counting down as they put in anesthesia, knowing that having someone slice up my brain was the highest chance of death I'd ever had on any given day since birth, I said what can be construed as a joke, or a prayer or a fear. Just before they injected in what would put me out, I smiled a fearful smile and said, "into your hands I commend my spirit."

I thought the fact that having put off brain surgery and qualifying for Boston was a good story, a good way to go out. There would be some physical therapy and neurological stuff but the hardest things were yet to come. I won't forget the date March 3, 2011 but when Facebook reminded me of it, I made it a point to reach out to the friends and family who had been kind enough to come out to Duke. I'm proud to say that with rare exception they are all people who I am still regularly in contact with whether they live near or not. And then I emailed the guy who actually cut me up, Dr. Allan Friedman to thank him. Like before he could bill me for something, he just wrote back and we traded some emails as humans that were somehow a doctor and his patient. I send him an old fashion Christmas card every year but I also sent him a picture of Kiana's latest 5k's. One of them may show why this kid has gone over two years without having a race that wasn't a PR. It's a finish line picture from the Paramount 5k. This the race I've done 3 years instead of the marathon that I put off surgery for because well while running is a solitary sport in many ways, I hope Kiana learns a lesson earlier than I did which is the while you have to do most of life alone, when you  have good connections, it's improved by doing it alone together. When the doctor asked for her time, Dr. Friedman responded with that her PR is now better than his. I've long joked that this whole brain cancer journey would be worth it if Kiana became a brain surgeon. Hmm, she's measurably already better in one way at 9 years of age, and in several others at least in her dad's eyes.

I shared with him the beauty of life that continues and that I still am trying to be like the one leper. Because somehow among the other memory feeds from March are that I went to Beaumont and won a marathon a little over 3 years ago, we talked about some of the running and things that have come from then. Two years ago, I went back on my own and won the half. This year I went back and ran next to Kiana who once again Pr'ed. The finish line picture wasn't that different, I was behind her looking tired and she looked happy to be at the finish line. But while this one would garnish far less attention from most people and no media, it garnished just as much affection between Kiana and I. In my book that's what counts most. In both of those races she would place in her age group, 3rd and 2nd respectively. Kid's going to have to get a proper coach someday. She's literally flying in both those pictures, with her feet seeming to not touch the ground.

I'm a chess coach at Kiana's school but this is only my 2nd year doing it because when this all started when you go through over 2 years without a full month break from a medical appointment... you stop thinking out more than a move in advance. But I think no matter what has come or will, the best choice of my life was to recognize that parenting would be my most important privilege and responsibility. It was a reassuring award that when she took her qualifying test for chess where only the top students would advance to the competition, she saw me grading it and didn't ask how she did. She knew her dad wouldn't tell her any sooner than the week everyone else had to wait. She by the way got the highest score and advances (she knows the latter, not the former). Good to see that we've both started thinking a little bit about the long game.

I've watched too many people die with the same diagnosis as me to not stay keenly aware of both the beauty and fragility of life. But when we're 3 months into 2016 with zero medical appointments and still almost as many till the next one, I breathe a little easier. I've been reading "The Whole Brain Child" and it's comforting that her neurobiological development is taking more of my thought than the disease of my brain.

We're still going and not intending to ease up anytime soon.  Yesterday I did my first Spartan race of the year competing against some family (though I beat them all, this was the first time that any of them were ahead of me at some point in the course, 2 of them in fact!). Then I did a second lap right next to my oldest friend who we've known each other since I was 8 and she was 9. Our kids did a Spartan kids race together last year and now so have we side by side... Ahh the circle of life and it moves us all.  I'm doing 3 races this weekend back to back to back, a new feat that's got me intimidated, 5k Friday, half marathon relay with the Bond girl Saturday, half on my own Sunday.  Kiana's got another 10k and Spartan coming up both in April and I'll be right there next to her. 

If you'd ask me to predict my life from brain surgery 5 years ago to now, I would have gotten it all wrong. If you'd asked me to predict my life from signing up for a marathon with a stroller years ago till now, I would have gotten it all wrong. Honestly, I would not have bet I'd still be standing but if nothing else I dare dream it's because I haven't been standing still. Perhaps just as importantly it's because even when moving, I've chosen to not do it alone, being committed to that relationships are the most important part of my life. I got to return to New York as well recently (now Beaumont and New York are both places I've been to both more than Duke for medical appointments not just period but since brain surgery!; that may seem a strange thing to note but to me, it keeps one more way in which life not cancer is winning).


The title of today's blog literally translates as God from the machinery. It is usually a reference to an unexpected power or event saving a seemingly hopeless situation, especially as a contrived plot device in a play or novel. There are days that I don't quite understand how life has been so kind and strange and normal in odd circumstances. But while nothing that I know of lasts forever, I am glad to be waking up each day to see that hope still prevails. Or as Van Gogh said I know nothing with certainty but the sight of the stars makes me dream. 

3 comments:

  1. You´ve been an inspiration. Keep on existing.

    ReplyDelete
  2. I thoroughly enjoyed reading every word of this. Thank you and God bless you.

    ReplyDelete
  3. I thoroughly enjoyed reading every word of this. Thank you and God bless you.

    ReplyDelete