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
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
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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