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.
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.
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.
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.
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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