Thursday, August 13, 2015

Search While Moving

You can be certain than any entry I write past midnight is nothing more and nothing less than a damaged brain which can't find sleep. It is not an attempt at eloquence or inspiration but rather what it's always been and says right up top, an incredibly raw and uncensored blog of how a guy hopes and hopes with brain cancer and life changes. I imagine my days of sleeping with the media are over and you look back and wonder whether their portrayal or the way you see yourself, which one is more inaccurate? Which one is the one that's being more artistic in their license of not letting facts get in the way of a good story?

There have been many kind words sent from all over... I don't know how to take the compliments. I know when kids learn to take one foot in front of the other without help we clap for them. When they learn to be a little less self absorbed and share life instead of living for themselves we know they're growing and growing up. But if when you are an adult and you sit and take those entirely for yourself and live for yourselves, isn't that the very definition of what cancer does? So how do you say thanks for praising me for things my 8 year old daughter has been doing right for years?

I was out running a watch free run for me with a friend yesterday on the trail. He couldn't get his watch to work as we started and it would take half a mile before the GPS signal came in and started telling us our distance and speed. He said he doesn't like that the watch takes longer unless he's sitting there doing nothing and he wished it did a better job of searching while it was moving. It took a millisecond for me to realize that's all I've been doing all along... searching while moving, uncertain what I'm searching for, uncertain where I'm going.

I was organizing some old pictures of many things and memories flooded from the last few years. Coincidentally I found the very last picture that someone took of Kiana and I a couple of weeks before the seizure... before I'd be the guy known by the scars. I think her smile is fuller now, mine's somehow both happier and sadder than it was then.

I finally caught some of the E60 piece while someone had me a bit trapped... I don't know what to say about the media pieces but was intrigued by the title, Remember Me... on the title alone I've already addressed that.  I'll let people who speak to their overall impression with that but there were pictures there of the person who I once thought I'd live and die next to, Kiana's mother. It was a bit surreal to see that but a few years removed only somewhat uncomfortable. There have been times where you feel the strong abandonment emotions, where you're tempted to vilify someone a bit more, but you recognize that when push comes to shove, if people aren't there when you feel you want them or need them, then maybe they weren't there all along. Plus we all find a way to justify our actions far too many times and when anyone lets me down, I try to justify theirs. They asked a question about it during the interview and I blew it off...

Perhaps because it was more recent, perhaps because she wished me a happy birthday, I found pictures of a girl I absolutely fell for since that break up; is she the one who the George Clooney girl label most aptly applies to or the one who it least applies to? Saying I love you is something I rarely do, one of the few places where I use my resolution to bite my tongue.  But she was someone I said it to. She was a girl who literally had no plans to do a race that I got her a bib too with less than 24 hours notice but she did it anyway, untrained, uncertain but finished beautiful and smiling. It was a race like too many of my races where there had to be interactions with my thoughts about cameras and the only reason I was able to breathe and sound relatively calm was because she wasn't too far behind the camera. Funny a picture caught on her phone (or was it my phone) that she took meant more to me than any media piece has... But she left more unexpectedly than I had hoped,  and you sit there and wonder how disappointed you are may well show just how damaged you started. You try to remember that your brain performed better measurably... and while people want to believe you can do everything yourself, the human system, the universe itself shows that the right balance and connections are what creates the best life itself. And in your frustration and sadness and anger, you wonder if she was a bigger disappointment than that last heartbreak because whatever you criticize about her, she knew what she was signing up for at the beginning and left anyway... but you look back and realize that race she did last second was a great memory even if it will always be associated with that kiss you had after the race. That relationship which gave you hope when hope was gone ended to quickly but aren't all good relationships that end much too short when they end? But what about that moment where she made the cameras seem irrelevant, was what made you love her? Still would any of those moments have even happened without cancer, was that relationship just one more cancerous element in your life? And you feel the disappointment, even if you try to forget or pretend to yourself that you hate her, you know that's just misguided emotion and a poor use of energy...besides isn't hate too strong of an emotion to waste on someone you don't like? So you justify it in that she's moved apartments in a very short time, she's still just landing at a new stage in life and you were just interesting to her as a passing fad till she realized and found where she belonged even if you never get to share it much. And somewhere quietly happily and sadly you hope she always does well.

So perhaps looking through pictures for too long of things gone by is not the way to do it at midnight. But when you're seeing a media piece that feels more like a retrospective slideshow than any future hope... Anyway, I was actually prepared for some of the stuff that came day... there's always nice messages and good people you connect with both some who find you from past lives, and strangers who quickly become friends. There's always quack jobs who tell me if I eat something 14 times a day or eat/smoke more marijuana, you'll be cured in 2 weeks, 6 months etc. Though this is the first major media piece that hasn't resulted in a marriage proposal from a stranger (there were 3 girls and one guy from one media piece, my favorite one of a federal worker from Florida whose social media profile was her holding a huge shotgun giving a whole new definition to a shotgun wedding) so I guess e60 failed me ;).

What I was not prepared for actually is one of the things that's been keeping me up. What I was not prepared for was a phone call from a friend who got diagnosed with a brain tumor a few hours before it aired. I wasn't planning on watching it that night anyway but that would have made it impossible. He's still in the middle of the bunch of tests. It occurs to me that I've met far too many people with brain tumors most by conscious decision to be active in this community but this is the first in my life of someone who I met who got a brain tumor after I met them. They've been getting lots of calls. It's funny he reminds me of some of the initial stuff, he's staying at work as long as possible, staying with life. I literally worked till the day before I headed to Duke.

I had snuck out of the hospital to go running, put off brain surgery to run a marathon, I'd run till the day before I checked in and walked furiously around the hall with an IV in my arm. I've kept searching and kept moving... maybe that's what I'll do till my dying day. I had some unexpected visits with my neuro oncologist and my neuro psychologists this week but while we've got a follow up in two weeks, I also signed up for a race about a year away, the longest outlying thing I've put on my calendar since surgery...  So I'll keep searching and keep moving...

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