At some level, I am afraid to trust my brain. And I’ve tried
to protect people from it. When the seizure first occurred a while back, I wasn’t
allowed to drive. Even as I was getting ready for the surgery, I talked to
Kiana’s mother (before I was aware she was leaving), about whether or not I
should EVER again trust myself to drive with her in the car. Yes, I have
medical clearance and at some level of course its less than consistent to say I’ll
drive with other people on the road but not with Kiana in the car but if anyone
has a child that they don’t put in front of anyone and everyone else on the
planet, then they are unusually cold in my point of view.
When I collapsed in March, that was the last time I ever ran
pushing a stroller with Kiana in it. And since then even as I begin to train to
run a half marathon with her and with my mom… well I’ve done it all with
someone and/or group runs. 2 days ago I had a car accident. As car accidents
go, it was “minor” I didn’t see a curb that divided two lanes and ran right
into it. It didn’t feel like a big deal but then the air conditioning went out.
I took it to a dealer yesterday where they essentially said I broke it all and
that it was totaled because of the alignment, the air conditioning etc. Keeping
up with my life traditions… well and being broke… and the fact that I haven’t
had a car accident since I was 19, I had only liability coverage. I don’t know
how deep in the hole I can keep getting. But what worries me above all is that
Kiana was in the back seat. No one was hurt, no one was anywhere near injured
and Kiana didn’t seem shaken up but…? Back when all this started, when I
originally blew off Livestrong’s offer to connect me with an imerman angel and
then as I found out how rare this was, they connected me with a girl who had
the same diagnosis. The left temporal lobe is the most active, most electrical part
of the brain and the diagnosis of tumors there almost always come from grand
mal seizures (as opposed to some of the other survivors of other brain tumors I’ve
met since then who it came from serious headaches etc). I didn’t have a seizure
but there are times I don’t see things. There have been times I can’t find
something despite the fact that I look hard for it and it’s when things are the
same color. With some memory issues, with some language issues, with some of
these vision things, people try to remind me that people have these things
sometimes. Where the balance of acknowledging that and realizing some of these things
have never happened to me until this all started… is not easy. Having lost my
health, my job, my spouse, my balance on the side of the road… have made me
less and less confident in life.
I sat and talked to a few friends last night trying to
figure out how to trust your brain or not. I have decent social skills in group
setting, if nothing else demonstrated by the fact that even when I am unconscious
and waking up from a surgery or a collapse in the middle of the road or a
seizure, I am telling everyone how much I love them, how good looking they are,
giving smiles and thumbs up.
I am heading back to Duke in a couple of weeks. The doctors
disagreeing with each other and so they want to talk to me in person and do
some diagnostic stuff on their own. I received the letter yesterday and they
made it August 21st and originally I tried to reschedule it but the
car deal somehow made it more urgent… I met with my counselor last night and called
some friends, wondered out loud if you don’t trust your own brain whether or
not I should be the primary guardian of my daughter. I emailed Kiana’s mother
to let her know about the Duke trip, and a woman who only sees the most
wonderful kid the world has ever known literally wrote back that she wasn’t
sure whether or not she could deal with the gas of having Kiana at that time.
That type of reaction continues to be a huge sale on how I should conduct life.
I really do think about going to school about becoming a
teacher and I tried taking the GRE and I couldn’t finish the test in the time
allotted, a frankly disturbing and scary thought for the kid who was often the
highest grade and turned his test in first.
No comments:
Post a Comment