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.