Thursday, November 15, 2012

Hope Less, Roam and Tick

The guy whose heartbreaking, brain related break up is literally on you tube still wonders whether or not to do these things alone. My cousin, now that I’m retired, has agreed to live with me indefinitely both rent free which I’m sure is helpful to her and because her and Kiana adore each other and if nothing else I can show the court when the time comes that I’ve never been trying to do this by myself.

Still, halfway though this Movember (I look horrible with a mustache) I am starting to absorb a little bit more that maybe, just maybe I do get to beat this? Or at least it’s not as consuming as it has been. If everything holds, this would be the first month since this all started that I don’t have some brain cancer related appointment. I’ve been delaying dealing with a tooth forever and ever partly out of being broke, partly out of the fact that I’ve frankly been working off the assumption that with this little time left, what’s the point of fixing teeth (with dentists obviously taking the right approach that they want you to have all your teeth in your old age but if you’re not going to make old age….). Ironically, appropriately, the day before the dental appointment while fixing a flat tire I broke a tooth and so then I had to get 2 teeth fixed and Kiana lost her first tooth. So I spent a couple of hours getting a tooth drilled yesterday and said, less than politely, to the receptionist that compared to some other medical bills uninsured dental bills were a joke. Perhaps showing me not to say things like that, it turned out I’d neglected it too long and a root canal will be necessary, more digging out of my head. It’s amusing that after all these appointments and MRI’s somehow a dental one and a dental xray don’t even count to me. Still, I biked 20 miles to and from the appointment. It’s funny how what I think will eventually kill me is what’s gotten to me in the best shape of my life.
Still, it’s been some lovely days. I haven’t accepted loss. I sat with a meeting with the department of rehabilitative services where as they look at my neuropsychological and my physical restrictions (ie shouldn’t work on a job where a seizure could make an effect thus no rooftops etc etc) and we’re taking a long term strategy. One of them actually asked if I would volunteer as a mentor for the type of kids I used to work with and we’re discussing whether or not it’s realistic with a driving restriction…

But I volunteered at Kiana’s school function on Tuesday and will be volunteering in her library. I went to a happy hour to celebrate the people who I had coached to their first marathon who got horrible weather and I got a couple of them to sign up for the Austin marathon. I still do lumosity most days and trying to actively distract myself while doing it, something that I’ve met with limited success but I still want to believe that somehow will power can get some of this back. I gave up on the ADHD medication because 1) they weren’t helping at all 2) I got incredibly dizzy. It’s intriguing to me that the long term insurance was approved without appeal but that some medical things like neuropsychological rehab were never approved and others things took a while. I am now uninsured so I guess I don’t have to have those arguments. And while if I actually get through all of November(movember) without a neurological appointment, there better be some form of celebration on December 1st… what do you do if it comes back? I want to believe that unlike my doctors think that I am invincible, often joking with my friends that I only have these health issues to pretend like I’m human every once in a while but in the end right now I’m spending more time with my daughter than I ever have. If that’s the cost of this disease even if it kills me early… I’m wondering if we didn’t get the whole of the human approach wrong, where we bust our ass to provide for our kids and then retire when they are doing the same so we can spend time with our grandkids. I understand and certainly focused on that being my job of parenthood but right now I get to have moments like this morning where I had to get a girl smiling because she was not happy that I wouldn’t let her go back to sleep to finish her dream. Is this the cost of my disease, less money, less trips but more time with my daughter at this age even if I’m dead in a few years? Isn’t that well worth the cost?

A perspective I have now I would have never bet on. I’m disappointed in the second best 5k in my life… disappointed I didn’t get to help much with a tournament I’d help grow for several years but when my daughter carves “I love you daddy” into the wall, well, I frame it. 

I am also working with a committee with Livestrong starting yesterday that will work with more young adults. For obvious reasons, old folks and children with cancer get more attention than the age that Lance Armstrong and I and people our age got it at. All I have to say about the Lance Armstrong news thing is, I never cared about his athletic achievements, but am incredibly grateful for everything that organization has done. So the guy whose planned events… is now trying to pay forward some things, making notes about this person’s scar or that person’s tattoo in case some of the face name recognition stuff fails…

Still, the guy who clearly mishandled a diagnosis in regards to his relationship, has had a playlist on his itunes for a while called hopeless romantic. In simple frankness, I’ve added more songs in there in the last month than the last year combined, perhaps being open to some realities. There is an incredible range of songs some quoted in here like waiting for an angel and the latest edition is a song that, pun intended, really struck a chord with me head full of doubt, road full of promises. And the movie that people have been trying to get me to watch forever 50/50, I finally got the courage to borrow a couple of weeks ago but still haven’t put it in the DVD player… It still feels like too much to ask anyone and perhaps more than I am willing to gamble on the table. So I wonder if I am more hopeless or more romantic? Or as this entry is entitled, whether I should just hope less and be grateful that I get to still roam through running and biking and be grateful that the heart is still ticking…

Someone asked don’t you want to just cuddle, , wouldn't that make life easier… … and one of the songs on that playlist is in the arms of a woman ( I don’t know but while that songs that I might be more at ease in the arms I still, even in a month without medical appointments am afraid of the ghosts in my mind or to quote that song…
Now most days I spend like a child
Who's afraid of ghosts in the night
I know there ain't nothing out there
But I'm still afraid to turn on the light

So I’m not sure the part of the brain that allows romance still works… But I’m still trying to keep hoping, roaming and ticking. 

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