Friday, September 7, 2012

This Ability


I sat with the social security office today and talked with the private insurance company. Both Duke and the local doctors had suggested it and they handed me both of their records and it was… hard to read and see. I literally cried at the social security office today, ironically confirming what my medical records show that my spatial orientation isn’t what it used to be cause I went somewhere else. The lady stayed there late on Friday (apparently, showing good government work ethic, they close at 3:30 on Friday). She corrected some things that I had done wrong on the form and clearly watched while I was obviously in despair. I had a friend call me afterwards to try to comfort me and I wish I could tell you that it felt okay but I said to her exactly what I feel, “this feels like we lost.” I don’t know the details of how this works but ironically the lady at Duke told me that in North Carolina you couldn’t own a home and in Texas, which has a strong homestead act it’s the one thing they can never touch (I don’t own my out right so the bank could if I ever get behind on my statements). Disabled? Really??? Really because some memory functions and some spatial orientation stuff is off eh? An independent panel of committee members will decide later and at some level I hope that those doctors go, nope you’re cured but then I went home and Kiana, who I never let watch TV, and I sat and watched Tom and Jerry (not the most intelligent cartoon).

I stepped away after a while and apparently this DVD loops. I went to go put her to bed and in one of those odd brain farts I kept turning off the light instead of the TV. I had gone earlier to Best Buy to ask them if there is a way to attach some thing to items in case they get lost, if there was an APP for that. The Apple representative there laughed and asked why and he started telling me of some other success stories that he had heard of people using their product to and I quote “Make up for their brain.” I smiled at him and left the store.

Last night I was at a friend’s birthday party, one of the one who points out that I sometimes repeat myself multiple times in conversations with her and don’t realize it and thinks it’s not critical to some things but obviously to some lines, if not all lines of jobs, it is. I don’t know whether to thank the universe or cy about  my social skills, having been at a party last Friday night, I wondered down the aisles and said hi to everyone and then bye to everyone and a person, in good natured ribbing, said you realize you said goodbye to me like 2 minutes ago, I hadn’t. Simple issues these are really and I’ve been doing them for a while and keep minimizing them but also still trying to conquer them. But one of the noted issues if face name recognition and I sat across someone last night who I couldn’t remember their name the entire time and when you’ve known them since shortly after the surgery, how do you ask when you’ve talked to them probably a dozen times. I looked her up on facebook this moring. I still did lumosity today even as I tried to accept the application for both the disability and the private one today. And then I cried outside.

And then I went home and I set up an appointment with DARS the department of assistive and rehabilitative services, whose job it is to train people back into taxpayers if they are willing and wanting (and capable) to get off disability. It’s an odd phenomenon that the insurance company would never pay for the neuropsych rehab that was recommended. The government will pay for that but health care is on your own until Obamacare kicks in. Andy when we had lunch said, in this country, if you have the right health condition you will fall and no one will be there to catch you. At some level, I don’t care how far I fall as long as Kiana still gets to fly. That’s when I broke down at the social security office and with my insurance company when I asked, what does my daughter get if I die tomorrow? It’s the question I asked November 5th, 2010 and one that I hope has a good answer when the time comes even if it’s tomorrow or seventy years away. But I made her dinner tonight and put her to bed and that keeps me going.

And then, the guy who has been in so many conflicts and long before this was a certified mediator, signed up for some training next Thursday and Friday to continue being able to do mediation and keep it up. I don’t know what the rulings will come but somehow I think I could handle either.

But I was never defined by my job. I took my jobs because they helped people and I will continue to commit to that lifestyle if employment isn’t the way to do so. A friend Penny Lane and I put together a party to celebrate however the Brainpower 5k goes. I am in second place in fundraising and unless someone reading this is a ridiculous donor, I am not going to be the lead fundraiser this year but my team is.
This has been rough and exhausting at some level. It tells you something about my mentality that I actually have 2 very intriguing playlists on my itunes. For the guy who has put so much effort into staying single (or at least none into finding someone else), there are 2 playlists which show you the hope and pain. One is called hopeless romantic. Currently it has 13 songs… the latest one added was one I heard (and immediately downloaded) recently called closer to you by Brandi Carlie. And the hopeless romantic in me clung. Was denying some of these deficits, socially avoiding the awkward situations what this is about, will it get better, am I letting everyone down?

my mind wanders through all that I've been hiding from
I tried not to let you down
Now I wonder if I've been doing something wrong
Help me get my feet back on the ground

Tomorrow I'll be lying under you
With a heart of gold and arms to fall into
I know that there might come a day my life is through
But I just wanna be closer to you

The other playlist is called broken heart or mind, which luckily only has 3 songs on it. The latest addition added this week as I thought of this decision was, for the guy who has humor as a coping mechanism, was the Bee Gee’s ’68 song I started a joke. (Showing that I still have a sense of humor we will take the easy joke here that 68 is my favorite number, you do me and I’ll owe you one). But I crack jokes every time I’m uncomfortable so the lyrics spoke to me:
 I started a joke, which started the whole world crying,
But I didn't see that the joke was on me, oh no.

I started to cry, which started the whole world laughing,
Oh, if I'd only seen that the joke was on me.

I looked at the skies, running my hands over my eyes,
And I fell out of bed, hurting my head from things that I'd said.

Life has competition and somehow accepting, even applying for disability feels like I’ve lost some other ability. The Brainpower5k starts on Sunday and the playlist is ready and my mom will be here in a little while. I kissed that little girl a lot tonight. I still have those abilities and I am not ready to accept that the others one are permanently gone… For today at least, swallowing my pride is an ability I focused on to keep some of those other abilities be realistic. I don’t know… I don’t know… I am going to my life meaningful still, with some of the things I’ve lost and kept I dream. And I sure wish that the hopeless romantic is always the longer playlist. 

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