Tuesday, July 3, 2012

A Snake in the Desert



Well, health care is an odd odd thing. Now that I have to sit there and figure out this COBRA thing which my absolute inclination is not drain resources when there aren’t many left, a twist gets thrown into the chamber. What motivates the human mind is fascinating. Someone who was incredibly helpful when my wife left was someone whose mother had left her with her father when she was real young. Now, someone in the county human resources department continues to be very helpful. I assume, along the path of the key to happiness being low expectations, that this like too will just be hitting my head against the wall on trying to improve things in my head but somehow I dare to dream. The person helping out, coincidentally, is someone whose father passed away of what I have. The universe continues to be strange. I asked the question point blank of what happens if I don’t continue to do Cobra which is of course that this insurance and healthcare game ends.

I am amused at that they call this Cobra. I am not quite sure why they thought that was the clever way to go, government always trying to find initials to make things easier to remember. But how can you hear that name and not think of the Moses story that the thing that had been killing you and the thing that may keep you alive look incredibly similar.

I keep thinking of Martin Niemoller’s remark about standing up for people:
First they came for the communists,
and I didn't speak out because I wasn't a communist.
Then they came for the trade unionists,
and I didn't speak out because I wasn't a trade unionist.
Then they came for the Jews,
and I didn't speak out because I wasn't a Jew.
Then they came for me
and there was no one left to speak out for me.

I am speaking up at least at this level because if it  holds and they find my doctor and duke to be a center of excellence (http://www.cancer.duke.edu/btc/modules/generalinformation19/index.php?id=3 )than anyone who ever works with UHC’s center of Excellence Cancer resource center would be able to go to Duke. Somehow it makes me feel better that may help someone else down the line though I'm not sure how. It’s something that continues to stick with me how little is done for brain cancer and at some level I both completely understand because it’s so rare and causes so “few deaths,” only 13,000 a year but that’s more than drunk driving causes (about 11,000) but of course with drunk driving, the solution appears simpler. If they get it to hold though anyone insured by UHC would be able to have the option of Duke be more feasible somewhere down the road. Not only that, things like neuropsychological rehab would be established precedent despite the fact it wasn’t covered for me. With all that said, I still want to help other cancers and things not related to cancer like I did before this...

But my own road is running out of some financial steam… I am not far from running out of resources, the last year and a half has drained a lot. Last night was Kiana’s first night back after being with her mom and knowing that she has me wrapped around her finger asked if she could sleep in my bed. It’s amazing the things kids know they can pull off and which ones to fight back are hard to know. Literally, she’s said things like come tuck me in and when I respond she can do it herself, she says things like yes but I like it better and sleep nicer when you do and she gets tucked in. She got to sleep in my bed last night. And after a week or partying and not exercising much and drinking a bit much… even lamely getting kicked out of a bar for the first time in my life because I forgot my license (due for renewal so it’d been left on the kitchen table)… I have to acknowledge that frankly if there was no one attached to me, I’d be okay with partying on the way out but with people attached… I want to exercise and fight back and dare to dream of having more years than I expect because I hope this little girl I’m raising will someday be someone who has enough independence to where we’ve managed to be friends.

I’ve gotta find a job but I think a couple of the interviews have gone bad because a lot of the last few scenarios have left me with far less confidence than you should probably present at interview, in myself in general, in my brain capacities. Why I doubt them more than anyone else I don’t know.
My brain gets donated to science when this is all over… I paid for one month of Cobra and not sure how many I’ve honestly got left. I wonder and hope that brain and that coverage are the snakes in what sometimes feels like my own desert but which snake, the one that drained something good from you or the one you looked to to save your life. I accepted the help of the “insurance” I’d paid into and took unemployment but you can’t pay cobra, a mortgage, daycare, food etc with that…

I don’t know how this is all going to go but I am headed to a track workout tonight, something encouraged by my neuropsychologist’s office today, tomorrow I am heading to a pool party to Celebrate the 4th of July with some strangers and some good friends. When feeling overwhelmed, it’s easy to notice the brain skills that are missing, the things insurance didn’t cover, the water missing from the glass, some of the people who didn't stay through the journey. Who knows how this all ends but over and over, I am grateful for that little girl, those moments where she's clearly a sleeping beauty that makes me realize I’m nowhere near close to losing the most precious thing in my life and to the people who remind me that the glass isn’t drained yet. 

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