Tuesday, July 17, 2012

Quincy's Cure

I turned down the county's offer... the problem was simply that 2 months worth of Cobra expires in two weeks and some of the things that had occurred were not started to research until about that long ago and then as has probably always been evident, I don't want to drain the very few resources I have left to treat a disease and the scars it left me with. I signed with an attorney and took the coin flip. I think he's rather go for more but I would have taken the offer with a little more Cobra coverage... the terror at some level has won.

There were some things lost in the surgery... that because of the circumstances after I may not have noticed in due time or perhaps I wouldn't have noticed it anyway. It shows at some level how deep the commitment to trying to figure out the brain that the neurosurgeons have been the ones who have called and emailed me the most out of all the doctors involved, more than the neurologists, oncologists etc... But the email I traded with the guy from Duke, while I will leave his part out for patient/doctor confidentiality, I admitted something to him that I honestly don't remember if I've ever put on here. I've shared it with friends and definitely withe the minister I meet with each week but while the rising lumosity scores give me encouragement and I'm somehow incredibly nervous about this Thursday night if I'll get any sleep before the second opinion, that I gave them a piece of my mind is still true. And who knows how much of it will come back. But in response to what my cognitive difficulties were I wrote back:

     "My cognitive difficulties are mostly memory and language. Part of the challenge is that people are where I've primarily made my living, my degree being in psychology but I meet new people and can't remember them at all where I used to be able to meet them their name and every detail we talked about. I learned to cheat/compensate on some of those things by little things like a smart phone and making far more detailed notes but the simple truth is that I'd been working with juvenile delinquents for several years and now when I'd go meet them in the lobby I couldn't remember which one they were etc or remember them at all; this isn't consistent, some I remember thoroughly and some I couldn't have recognized at all. I made a couple of mistakes at this at my job that were memory based and it cost me the job (I was unexpectedly on the stand, this has happened a lot over 6 years working there and I remembered something wrong and it cost me my job). I had talked to both a counselor and coworkers about it but despite my local neurologist and neuropsychologists having recommended neuropsychological rehab my insurance doesn't cover it all so I've been doing things like the iphone andlumosity.com. I also have issue-s like when my daughter, a 5 year old, asks for things like orange juice I go and pour it and then drink it and then go back to doing what I was doing what I was doing until she reminds me. I go into the garage to get something and in the short walk can't remember and then when I get back in the house I remember what tool or such I needed. I leave things outside or my garage open. These are the ones that come to mind easily. I seem to not be able to find things on occasion that are the same color resting on something else and can spend an hour looking and not see it and then it's there without anyone having moved it and incredibly obvious. As you know I put off the surgery to run a marathon and I used to just look at the route once and be fine; now I look at it thoroughly and still sometimes get  lost. On the language thing, I say things where sometimes people clearly know what I'm talking about but I say something completely different without recognizing it and people like friends point it out and others don't. I've sat with a counselor over a year talking about what the right way to share this with my job but did so fairly minimally because all of the initial seizures had policies re-written etc and I'd been put in a back position and wanted to leave but the county had decent insurance.  "

You have to wonder if more honesty with my previous employment would have made things better or worse after the collapse on the side of the road when the human resources person said directly not to tell them anything I was being careful about unless directly necessary. The guy who had never called in sick, and maybe overshared this, is starting to understand why people have some level of privacy about their illnesses like ones that are random like cancer and ones specifically related to the brain. Hell, some of this stuff it took me a while to admit to myself and others to share out loud just out of some basic human fears and others in what I've said here before that this would turn into I am Sam or Kramer vs Kramer.

There's still no job offer that I can take and be a single parent. I keep fearing that my life will turn into Les Mis where there seems to be a huge highlight point followed by literally poor circumstances all the way to death. I am nowhere near giving up but some things in my brain and in my approach are chipped. I do want to still try to destroy that track meet tomorrow and defend my titles in various things but in the end, I am learning quickly and painfully money makes the world go round. I caught a movie while waiting in a lobby, John Q about Denzel Washington playing John Quincy who essentially becomes a terrorist to save his child's life by giving up his entirely. 

This is what that guy was willing to do in this film to provide for his child... my mother, a single mother on her own, left me alone a lot of the time to work two jobs and I was raised partly by her and partly by uncles and grandmothers and grandfathers which I loved that woman and missed her and well I didn't understand till now that providing is sometimes all you can do. So much of my family's men weren't there so they could be away paying the bills. They really didn't  have much choice in the matter. In the end of the film, John Q tells his son get whatever job you need to, even if you have to compromise some part of yourself to make sure you provide adequately. That's a heavy request... but it may be something to buckle down on soon and realize that something's gotta give. How do you make that decision?

I am nervous about Thursday night because Friday's second opinion may keep the world spinning erratically. This morning Kiana whose mom still misses visits and phone calls for reasons I cannot understand has stated that she doesn't want to visit her mother and neither my cousin nor I could get her to explain why. What do I do to fix the world, to protect hers?  

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