Friday, August 17, 2012

Duke Confessional

I still have confidence at some level in my brain but it continues to be questioned. I’ve shared many medical details before and way too much information but let’s take it to another level. I don’t know how wise that is on a blog but honesty is what I prize the most. All of the information here has been shared with others before but I suppose if you’ve cared enough to still be reading this… I thought you should all have the details that I’m covering with Duke next week. Some of it I haven’t shared much because it’s tough to admit. Some of it was always trying to figure out a way to overcome it, to not be vulnerable, to think that somehow willpower alone would take over and I’d win… I am glad to be training for things like the brainpower 5k and to be breaking five minute miles. I did my first 2 a day workout yesterday since high school and it was an out and back and I high fived lots of people on the way back while I was in the lead of the second workout because I like being part of a team. My brainpower 5k team is one of the bigger ones and full of good people but I wonder if I fade or lose these capacities how much lonelier this journey will get. One of the songs on the brainpower 5k playlist is Kryptonite with lyrics I hope someone will sing to me someday:

You called me strong, you called me weak,
But still your secrets I will keep
You took for granted all the times
I never let you down
You stumbled in and bumped your head,
If not for me then you'd be dead
I picked you up and put you back
On solid ground
If I go crazy then will you still
Call me Superman
If I’m alive and well, will you be
There a-holding my hand
I’ll keep you by my side
With my superhuman might

The biggest issue of it was always the worry that if I admitted too much of this and it became public that a woman who we mishandled all that with the diagnosis would make it to where I spend less time with my child but when the divorce was happening I offered her primary custody if she would keep the house and dog so that the upheaval would be less. She passed on that. I asked how she wants to handle things if they go south and she said if I’m ever in treatment she could watch Kiana that day… One of my friends pointed out that I had no need to worry about losing custody as this being Texas, me having brain cancer, and unemployed, she’d have no problem getting it if she actually wanted it. We all have to get through the day somehow but I guess a year later I realize that if someone can leave you in the hardest time of your life and have no sympathy anywhere down the road leaving you at your brokest point when you paid off their undergraduate and graduate degree, they have an incredible skill at disconnecting and it’s incredibly depressing to me that she could do it with both me and our child.

As I head to Duke where 3 (maybe 5) world class neurospecialists can’t seem to agree on what’s going on in my brain (1 thinks they did surgery on the wrong part, one thinks it’s cancer, one thinks it’s not) but all agree that it shows stability enough to where they want to monitor it less (at least at this point, I’ll be at Duke next week and it’ll be the first time they see me in a year).
But let’s do some confessions. The running group that I trained with this year I was the fastest on and on routes that were out and back, some of the time they didn’t see me on the way back. They’d teased me about how they thought I cheated and without exception every time that happened, I’d gotten lost. I had a GPS watch on so I knew how much distance to cover and I had enough wherewithal to always get back to the starting point.  Somehow I haven’t found that watch in over a month and I’ve spent some time looking.

My memory is not all it used to be. It’s still in relatively fine shape but eloquence and jokes get me through the day when I can’t remember things. But there are some situations where I can’t cover up some of the things I miss. I went to one interview with a shirt inside out… (someone noticed it later and I joked about how it was more stylish, that job never called back).  I went to another one with my zipper done, we’ll call that one coincidence. I went to one with a hole in my pants that I didn’t notice. I don’t know how I am missing these things. Some of my spatial orientation is off somedays. The day before the Boston Marathon I got lost in Boston even though I’d pinned things on my iphone (friends have blamed the weird Boston layout; at some level I question my memory). I couldn’t find it despite desperate attempts and finally made a friend who interestingly enough by taking me to the first place I’d gone after the car was able to drive me backwards… memory is an interesting thing. There’s a specific game on lumosity for that I keep using and I work much harder at looking at the routes beforehand now that I’m coaching.

I am helping the person run regionals this year though I’m still very much involved, they are in charge. They  have questions and things that I used to do with just a few moments of effort I go back and look at my notes that I did 2 years ago, a few weeks before the seizure.I left my car keys and couldn’t find them twice this week… Once I found them after 45 minutes, the other one I found them in the car. Some friends think it’s stress, maybe it is. But these things worry me, especially with a 5 year old who is a few days from starting school. I have her list of school supplies and it’s like 10 days away and the emotions have already started. I want to be an adequate father and when I share these worries, wondering out loud at what point it becomes reckless to, people have pointed out what choice do you have and that over protecting your child can be harmful too. This is tough to a guy who never put money in savings until he had a kid… never bought a house as an investment till a month before she was born to have it be a block from a good school.
There are days the muscles spasm. Until today actually it had never occurred to me to videotape it but I did so. A slight spasm in my right hand had been noticed during the neuropsychological evaluation before but somehow this one in my right arm and it has happened in my right hip seems worse. I’m an athlete so I’ve noticed them before during tired muscles but I haven’t been doing any exercise on the right side of my upper body.

Interestingly enough, I had dinner with one of the people from the Brainpower 5k who has read this blog and says you blog some incredibly honest things but do you use that as a way to not share it with human beings in front of you? It was a great question. I don’t know the answer but if that’s a sin that’s one more thing here to confess.  

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