My “sister” Susan and I a long time ago sat and talked about
how her husband was struggling due to some injuries that may not allow him to
continue his cycling habit with identity. She stated he had a hard time
staying “I’ve always been a cyclist… if
I don’t get to be that anymore… than who am I.” I responded back then with,
despite always have been in athletic events, that I was glad the biggest part
of my identity wasn’t athletic which had to give but that it was my
relationships and my intellect which perhaps would take some chips but I
thought it would hold mostly solid… fast forward to now…
My intellect is chipped at some level and while my overall
lumosity score is up… some things are down. The game I struggle with the most
is one where you’re supposed to be a waiter where you remember old customers
and their orders… I’d built my life around relationships with my friend Street
saying that people were clearly my biggest hobby. I struggle with attention and
there are some jobs where I might be otherwise qualified but I haven’t applied
because I don’t want to be the devil in the details that can’t be done. And
while that part of my identity I’m starting to get some confidence because of
the lumosity, I’m also still wondering how the kid who was always nerdy… is
missing part of his brain.
I sent the neuropathological reports to a couple of doctor
friends… they have always seen medical stuff and neither of them is their
practice but they can look at it as recent graduates and talk to friends about
it and be completely naïve and blunt because they have no liability issues. One
things maybe it was always a misdiagnosis and if that’s the case then at some
level I should possibly be more worried because then we have no idea how we got
here. The other one said that I think you had cancer and somehow you’re just a
statistical anomaly and there’s no way to tell you anything about recurrence
since your tumor was 3 in a million to begin with. He joked about how it’s too
bad that my favorite show House got cancelled cause maybe I could have tried to
make them figure it out.
And next Friday, I am getting that second opinion and the
one doctor that I didn’t want to replace out of the random lot I drew and I are
going to sit together… he’s having John Hopkins Dr. Berger, apparently a world
renown neuro pathologist and the Duke guy talk and try to figure out what the
hell we’re doing…. He was the guy that did the biopsy, the guy who had to hear
me say as my first reaction, “Rub some dirt in it.” And in the end, he knew
what was at risk and to his credit (discredit?) he acknowledged he didn’t have
the skill to take something on in that part of the brain and tried to pass me
on to a friend in Dallas but I chose to go to Duke. I trust him a lot and had
he not passed on doing the surgery… I am not sure I would have gone to Duke.
Says something about these guys characters that I literally have cell phone
numbers for him and the guys at Duke and my neuropsychologist gave me a book
about memory, something he states he’s never done with any other patient. I’ve
still not told Kiana anything and I’ve still not really absorbed it as “real”
thinking that somehow when that second opinion comes in that maybe it will
conclude and finish with the same guy and that unlike I’ve been thinking for a
while that I will go back to thinking that for the time being my future has a
clearer “Cause of death-unknown.”
I’ve lost a lot of things in the last 18 months… a job, a
spouse, a part of my brain, some friends because of single fatherhood and them
realizing that a guy who doesn’t have that much free time is less fun to hang
out with, the guy who used to run every ultimate tournament in Austin rarely
plays anymore, and I guess I hope/ am nervous/dream about the possibility that
I am about to lose a cancer diagnosis. Oddly enough it was literally within a
month of me finally starting to get comfortable with the label of living with
it…
But while ideals are great and ideas are a way to chase them…
I created a playlist a while back, full of slow songs called exactly the same
title as this entry, the idea of you which was stolen from a brilliant play(http://www.ocelotfactory.com/parakeet/idea.htm
). It’s a brilliant short act but there are of course 8 songs on the playlist
where I tried to reconcile how different my ideas and realities had turned out
to be and so quickly. Some of those songs have been previously referenced but I
guess on Friday I am hoping to be singing one of them, it’s a brand new day,
for the first time in such a long long time, I know I’ll be okay.
More than one person has noticed that the idea of a
significant other pops up way too often on here… part of that is that this was
something just as damaged by all this in me as anything else. But… I’ve also
kept it front and center at some level so on Friday, no matter how this second
opinion goes, I am taking that forever necklace down that sits on my rearview
mirror and taking those livestrong rings and I don’t have the heart to throw
them away but I’m going to put them in a safe that my bank provides me for free
as an outstanding member (read, I owe them tons of money for a mortgage, we’ll
throw you a free bank box 15 miles from your house). If it comes, it comes.
Unlike the new events which I’ve signed up for, I am so far away from being
able to take a real swing at that and thinking maybe George Clooney’s ideas
aren’t so bad.
I gotta find a job and pay the bills soon and very soon,
tomorrow is the panic button date…who knows how long some ideas will last… how
long some realities will but I hope to be able to take them and afford them.
Still, I am struggling what is the idea of me? What is my identity? I don’t know… Pentti Saarikoski, a Finnish poet who wrote a serious of poems where the series was called “What is actually going on?” He wrote why I write: “By writing I create an identity for myself. Without it I wouldn't feel being anybody, thus a personality. - It's not as much a question of self-expression as a need of finding yourself.” Here’s hoping Friday is not heart breaking.
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