I have seen a doctor on average a little more than once per week. That’s not actually true for example I’ve seen 6 doctors in the last week. My favorite one has always been my local neurologist who says things incredibly bluntly. I saw him today and my neuropsychologist who recommended the lumosity thing that I still want to be that because I’m getting better scores there that I should accept that I’m okay.
Three different doctors now want me to apply for disability. That doesn’t feel right. The neurologist today said look you need to accept that part of your brain is permanently damaged. It’s the left temporal lobe and you aren’t going to be as functional as you used to be. I tried to argue with him and for the first time ever he waved me off and said, “You are not omnipotent. Accept that.” I had taken a friend with me to the appointment who had the social awareness to put their hand on my shoulder and say that. Three different doctors on the cancer and the short version is that some think it is, some think it’s not but that it doesn’t matter, we still have to monitor it and they all think I should take different medication. In the middle of the frustration all I could ask was, “Look am I still fit to raise a kid? Can I still exercise hard?” And the answer was yes to both questions. I supposed if I can’t have everything, I’ll take that. But the one thing they agree on is that MRI’s done need to be that close together.
The kid who has always himself by being intelligent is really struggling with the fact that his brain is not what it used to be. I talked to a couple of brain tumor survivors who told me they applied for it and got it (the lady at Duke pointed out that with lots of brain tumor types, it’s actually automatic). Afterwards I went and had lunch with a friend and in simple frankness they had a beer on sale, Boston Lager which had come out this year because of the Boston Marathon and I for the first time in my life, had a beer before lunch. I cried to my friend and she said you’re doing fine; welcome to being like the rest of us. I don’t know what the polite or humble way of having been valedictorian and a national merit finalist and suma cum laude with 2 degrees accepts that his IQ and memory no longer match… I went and saw the neuropsychologist afterwards and told him that 3 doctors want me to apply for disability and he said yeah that’s clearly not your style. We had a good conversation and I was glad to see him advertising the Brainpower5k.
I was told to tell people that this may trigger my seizure threshold and so I did. I emailed the group I train with, the Austin ultimate people that I help run events for, the people I run with, the group I’m coaching and told them if they wanted me to pass on coming that I understood, having run events and worked in the legal setting I know sometimes people prefer to avoid liability. And I told them like the doctor said that if I am found collapsed again that I do need to go to the hospital unlike signing it off like last time which was fine with him.
I’ve started watching a series called Boss about a guy whose mental facilities are diminishing due to a cognition problem. Wanting to hold onto power, he doesn’t tell people that his brain is failing him. I watched an episode today but I’m not going to be that guy. I am going to hold onto what I got but I am going to be honest and open about it and if it ever fails… it fails but I am not going to live in fear. I’ve started running with Kiana again with an app that can tell people where I’m at. After the appointments I went out and ran 6 800’s and I destroyed them. I’ll take that coping mechanism. And then I got home and Kiana was dropped off by her mother. I told all the doctors the same thing… if I didn’t have a kid, I wouldn’t be taking any meds and I’d be wondering the grand canyon and when I went I went. I bought a house 5.5 years ago because it was a block from a good school. And I’ve walked her there both days and cried both days. One of the tumor guys said, think about your kid you want to put your pride and put your daughter in an apartment? They definitely went for the sinker there. Still, I got home and what I applied for was a job that trains volunteer to help those who are dealing with terminal AIDS and cancer patients.
I’m not omnipotent. I can still run hard and I am still fit to parent.This morning as I was telling Kiana it was time to go she said I had to wait because she hadn't gotten her lipstick on yet... I pray to whoever is that they let me keep those moments as long as possible.