Friday, September 21, 2012

Transitional Hope

I attended Livestrong's cancer and transitions class yesterday. It was a class only for men with a workout in between where the guy leading the workouts could clearly tell that I was in better shape than most people in there... So far this week, I've cycled more than I ever did while training for the century but still came in first in the track and hill workouts at my group (there are guys who are faster than me but they didn't show up this week). I've come to realize that exercise is my hoping mechanism, not my coping one. To quote Bon Jovi, you've got to hold on to what we've got, it doesn't make a difference if we make it or not, we've got each other and that's a lot. For love, we'll give it a shot.

Ironically, and not that there's anything wrong with that, the class had at least half of the guys there that were gay. Whatever your stance is on that, I think it's fair to conclude that gay men as a group are not wired the same as straight men as a group. I was amused at that but it was interesting to hear the discourse in there and people talking about their changes after the cancer was no longer their concern, as it's no longer mine but I am not sure it ever was. We had to write why we joined the class and/or what our goal was. For me, I wrote down that I was trying to avoid continuing making rookie mistakes. I realize that my first marathon, the initial diagnosis, some things about parenting, etc has come from thinking I could do it all (a belief I've still not completely lost) but trusting your brain a little (lot) less makes you more human and I'm nowhere near ready to embrace it. I don't have to do it the way anyone tells me or even points me but there's nothing lost in hearing and comparing someone else's experience. I keep thinking about how my first marathon I trained by myself and the second one I trained with a group. Now there is a huge range of people in my group speedwise with 20 opinions but there was at least something to compare to.

From that class, I went to Kiana's parental advisory council and perhaps showing my different wiring, around the tables there were 14 women and me. Today I had lunch with a psychologist herself who I hadn't talked to since this all started and as she listened to me about the fact that I don't want to date because of this, that I don't want to accept the label of disabled, even that I bike around rather than accept some of these rides, she pointed out quickly that I don't want to need anyone. Call it being a hispanic male... My great grandfather didn't give up driving until he was pretty much forced to in his 70's and my grandpa who is 70 is still fighting us for it and me... I might have to give it up at 32... Still, I've bike more than a 100 miles this week (when you haven't done it in 3 months, it hurts) and I've ran more than a marathon distance and still doing a race on Sunday (a 10k)...

Kiana now has health insurance again and after the last couple of years, that's thrilling. Her mother and her boyfriend still dropped off  Kiana on Thursday and no one stepped on the property and it went without incident.

I'm impatiently waiting for next Thursday where we decide what to try and what to do from here. The new neuro oncologist guy is pretty great, pulling in all records, emailing me and trying to solve the puzzle. I've made the joke that he's like house but I do think that it's a puzzle to him and that kind of curiosity and intensity is what, if anything, will cure cancer someday. But he understands the neurological losses that I've been telling people about for a year and finally it sounds like someone is listening... I met with the counseling I've been meeting with for a year today and couldn't help but think of the old biblical text and now remains, hope, faith and love but the greatest of these is love. I agree with the sentiment but I guess I'm glad I have all 3.

Thursday, September 20, 2012

The Mild Wild West

Well, my case is curious enough to be turned into a house episode. Next Thursday the new neuro oncologist, who has finally done everything that I wished any doctor had done, has compiled all records and will be presenting it to 20 doctors, neurosurgeon, oncologist, neurologists and general physicians called the brain tumor board and think about some ideas. The official verdict of how long they aren’t going to let me drive comes in that day. The great irony is that it came the day after an interview which went well enough but they needed me to able to drive which to me would be an ideal job.

Showing something or other, some would call it independence, others would call it stubborn pride, I have not been taking the rides but rather, for anything not involving Kiana, I have been biking all over town. Saturday, I biked 10 miles to the marathon group I’m training then ran 14 to one of the highest points in Austin. It was supposed to be 13 but I wanted to go to the top and was grateful that a few people came with me. I biked home again.

I was worried about a carless weekend with Kiana but it turns out that a rainy weekend was an indoor one anyway and that this kid’s imagination is wild. There was a bit of sunshine and we went outside and drew on the sidewalk. Later Sunday it was raining pretty hard and Kiana and I were going to run about 8 miles in the stroller but since it was raining I decided to cut it to 4. She complained at the end that we were supposed to go longer and I pointed out that it was raining and she said, that’s what this hood is for. Man I love that kid.
On Tuesday, I was trying to figure out what a life without this car would look like. I had a volunteer appointment at the dispute resolution center where I’m a mediator. I hadn’t done once since this started and just to make sure that I got the details right, I made extensive notes and the other mediator thought that it was heated enough to where we weren’t going to reach a conclusion that satisfied both parties. In the end, we did and both parties rated us as excellent and that they were very satisfied.

From there I went to a medical appointment, from there I went to the Livestrong counseling classes. I read to her the entry from here about avoiding cancer, about how I never want to be someone who sucks up resources without giving anything back and she kept wanting to point out that I was far from doing that. I’m not sure I believe that. From there I stopped at a running store and picked up new running shoes since the ones I’ve had were well beyond worn out and from there I went and did 4.5 miles of speed work on a track with my group. I biked home and the day had gone great in my book, I literally was standing up on the bike pumping my fist… when I arrived home.

And there in the middle of my driveway was Kiana’s mother and her boyfriend. Now they’ve done drop off tons of times but he’s always been whatever enough to stay in his car. Last summer when this was all happening I let him know to never be on my property. There are lines in the sand, and in this case, Texas law, that have to be sacred enough to be respected. I told him to get off my property and he said to make him and while in my entire life, I’ve never started a fight, and I hadn’t gotten into a physical one since high school, I put the bike down and shoved him off my property. So I did and it wasn’t much of a hassle really, some pushing back and forth and me putting him in a headlock  where we went up against his sideview mirror and it broke. At that point, Kiana yelled “Go, daddy, go, mommy left us.” At that point I snapped back into reality but I had him in a headlock…so it was awkward. My ex pushed me away and told me to get off him and at some level frankly I was glad that I didn’t need a girl to protect me from another guy. I know some people who read this will be disappointed and I sort of get that but I don’t know that I have any apologies for taking someone off my driveway when they’ve been told to not be on there before. In the end the police was called (by me), and they definitely picked up that I was a strong personality because I am. They said he wanted me to pay for the mirror and I said there was a 0% chance in hell I was doing that without a court order. He received a criminal trespass warning that’s now part of official police records and hopefully he understands there are lines you can’t cross. Someone reprimanded me for doing that in front of Kiana… and I for the first time ever in my life reprimanded her for something I had no problem with her saying… but yeah there are lines that are too far. You can sit there and lie to me while you’re having an affair with my wife and putting me and my parents up at your parents house during brain cancer surgery but for the first time in my life, I understood Texas Law of why your own place is sacred and there are lines that if anyone ever crosses with Kiana, I’m okay with her defending herself.

Some Texas laws seem overreactive and are making my life milder by not letting me drive. Some Texas laws are from the old west and it says something that the evening ended up with me receiving nothing and him receiving a notice from the police saying if he was ever here again, he’d be arrested.

I am about to bike to Livestrong’s cancer and transitions class, a men only class about dealing with some of the losses because let’s be frank some of those mess with machismo ego. From there, I am cycling back home where I’ve joined Kiana’s parent teacher association and from there I’m cycling to do a 5 mile workout with my group. I’ve never started a fight, and the Livestrong counselor tells me I seem incredibly adaptive. I don’t know, I’m exhausted at some level emotionally but I am going to guard  my lines and help back in whatever ways I know how. Some of this has been a lonely journey but I am still grateful that even most of those parts have not been alone. 

Saturday, September 15, 2012

Magic Potion

Today, I borrowed a bike since my driving restriction may be a few weeks, a few months or a few years. Okay just one year. It's 2:30 in the morning and I am not tired and can't sleep but I still have a marathon training group to coach at 5 AM and so I guess I am particularly grateful for that Livestrong training because I am going to bike 10 miles, run 13, and then bike 10 back. If nothing else, brain cancer has made me a better athlete.

I sat with a counselor this week, the same one I've sat with for over a year, and part of the problem here is identity. My neuropsychologist has tried to point me in the right direction for a long time about how I "have so many gifts." That's not meant to sound as arrogant as it might but the problem is that I keep noticing the deficits, partly because I try to be an over achiever but also because it was such a huge part of my identity. I was first chair in trombone and still own it. I was in the bell choir. I was captain of the cross country team and ran from 3rd grade through college. But the two biggest part of my self identity have always been my intelligence/memory and my relationships and that's what this has taken away.

I traded emails with the new neuro oncologist today who is hesitant about me trying some new ritalin drugs to see if some of this comes back. Out of the 7 doctors who I've met with, only one thinks that's the way to go but... if this lowers my seizure threshold and if these arm spasms are being labeled focal seizures and aren't going to let me drive anyway, and if this has a possibility of bringing back some of those functions, why not take that risk? I can't do it on my own because you know there's that whole having a prescription thing.

I'd started cheating in one sense for the first time ever. I've had some teeth issues for a while now, over a year. They have finally started hurting bad enough to where I couldn't sleep and so I found the pain medication from the surgery and started taking it in the middle of the night the last couple of nights just to be able to sleep. A friend of mine brilliantly pointed out that I should go see the dentist so I did and let's just say that the dentist knows I have brain cancer and there was nothing much he could do that was realistic financially but also told me what it would take to pull out my teeth which is probably the route will go. He prescribed me some antibiotics and some pain medication and said he hoped that would buy me more time but he becomes doctor number 8 in the last month. I mean there's a reason Maslow has his hierarchy of needs.

But that theory on the hypothalmus and how I've made some memories better than others has me intrigued. I keep trying to solve the puzzle and try to ignore the fact that recognizing the problem may not mean there's a solution. There are diagnosis, ie brain cancer, which may not have a cure. But let's look look back at what I have kept, a big coping mechanism of running (a gait analysis today shows that my right side walk is still weaker but that once I pick up the speed it's back to normal). That's in a different part of the brain. I listen to music a lot which is the opposite side of the brain. I still use humor which is the left temporal lobe but closer to the front, not the center.

I've started to acknowledge this to a few people I trust and a few people who should know. Kiana has new teachers in kindergarten and in after school care. Her kindergarten teacher I have spent time and it took me a week but I nailed her name down. Her after school care teachers, I trust her director and there's been a couple of times where she's said, "we already had this conversation" so I told her that my auditory memory isn't what it hasn't been and she made some notes about Kiana's 2 new teachers (it tells you something about my daughter's daycare that the descriptions for each were mohawk and tattoo). And then tonight, I went to a party that combined the cancer and running communities (how could I possibly not fit in) but there, one of the people who I've acknowledge this to, my friend Megan went and was incredibly gracious and said hey you remember my friend Meredith who you met etc... Part of the challenge of having been front and center most of my life and having been relatively comfortable with it is that the main skill that got me there was that I cared about people but the other was a pretty high face name recognition. Without me admitting it, this has not been picked up by old friends because I do recognize them but as I sit here and try to accept it more, they are being helpful.

As I left the dentist and stopped by Kiana's daycare to finally ask the director for their names with some cheating cues (I'd ask them a couple of times and after a while it's embarrassing so I try to find cues or pictures of people who I should remember and study at home, trust me facebook is awesome for this skill), I walked out and Kiana gave me a gigantic hug. She was playing with some colored water and poured it into my hand and told me to drink it because she made it so I could live forever. She got a bigger hug back.

I don't know what's coming or which doctors or prescriptions or driving restrictions win. And there may not be a magic potion that gets anything back. But I am not done trying. It's going to cost me a tooth but I'm still going to try to nail it.

Friday, September 14, 2012

Conspiracy Theory

There’s an old saying that just because you’re paranoid doesn’t mean they aren’t out to get you. I’ve been trying to figure out what was wrong for oh almost 2 years now and am intrigued by this new theory that it was damage to hippocampus that causes my neurological issues. And that I am able to make new memories far easier when emotions are concerned than ever… 

So this is no medical journal, just some touches of life here or there to remember if this memory ever fails, that I can take these slices of life. So let’s cover face/name recognition issues, I went to Kiana’s first back to school teacher’s meeting last night and there was a guy there who tried to talk to me about how great the PTA was and went on for quite a while. This morning he came up and said hey J. I sat down in the school lobby there like a kid waiting to talk to the principal and tried to repiece how do I know this guy and it took a bit but it came back but I never remembered his name. Then I remembered how there was a girl who is a runner (and slightly heavy set for a marathon runner honestly) and at a meal which was the first time I met her, she criticized the cancer community in reaction to what I had told her I’d worked on for Livestrong, Hawktober and the Brainpower 5k. She, out of apparent personal bitterness because her own degree is in Oncology and has not been able to land a job, went on a small rant about how she would never help out with cancer causes because clearly all of those people were only motivated by money. Now I’ve never gone to work just for money but everyone goes to work partly for money. Anyway, let’s just say her name and face are very clear to me. I’ve met people since then but without exception the ones who I have no problem remembering are those who made an emotional impact and the ones who I can’t seem to place as well are those who have a smaller one (with both sets, I sometimes have a hard time with names). This, of course, is true for all human being but right now I am exploring the fact that there are people who have talked to me 10 times that I can’t seem to absorb and people who one quick moment and they stay…

My auditory memory issues are long documented and I accepted that a long time ago and have learned to compensate by things like an iphone and writing more extensive notes. It tells you something though about my pride that most of the time I still wait until the session of whatever to make thorough notes after.  But even as the tests are going on I am trying to figure out the puzzle, like I had this test where I was told to remember 3 things (a test I’ve done a few times) and usually get 2 or 3 correct but it’s not as easy as it should be (they give me 3 things, tell me to remember and then do other things to distract me). The last one was remembering dog, blue, and tree. I kept wanting to say green but remembered it was blue but mumbled why am I trying to say green, because the tree is green.

It was interesting to see this new neuro-oncologist have a good will hunting moment with me trying to point out to me that none of this is my fault. He wasn’t as successful. I still want to try to be independent however I can figure it out. If the driving restriction answer comes as that it’s going to last a long time, I’ve started looking for a bike so I can continue having life. I told Kiana I may not be allowed to drive for a while and that kid didn’t blink and said well school is only a block away (it was helpful and convincing today that she smiled and danced in the rain on the way there). For whatever it’s worth, she did point out that too much further and I have to push her in a stroller

 At her parent teacher conference thing last night, they said to keep track that every third day is PE so to make sure to wear athletic shoes. This is a little more complicated than putting things in an iphone so I look for a solution that may just be keeping an extra set of shoes in her back up in case I do forget. We also signed up for marathon kids which I’m excited about. 

It’s been a long two years but I think it’s fairly clear that I’m now allowed to quit.

Thursday, September 13, 2012

Finish My Dreams

I sat down yesterday with Dr. Valiant, the first neuro oncologist this town with a well establish population has ever had. The guy seems relatively young but also incredibly curious and brilliant. He asked a lot of good questions and looked through my reports and thinks that these arm twitches are focal seizures. He then asked some pointed questions which made a lot of sense that I hadn’t though about… it was unclear to him whether the biopsy or the surgery had caused the memory deficits. It was well brought up that I would have missed some things between the biopsy and the surgery because unlike this year where I’ve gotten lost… last year I was always running with someone just to be extra careful. It was also pointed out that some of the deficits I had on the job would not have been noticed because between the biopsy and the surgery I wasn’t at the job I’d held for years and didn’t need to do anything else. The tournaments I ran I didn’t run that year and while yes I’ve run more since then, and I have put more effort to get it right, I didn’t have one in the middle to measure by. All I had was running which this didn’t effect.

He looked at my neuropsychological and said that just from looking at it I would have qualified for disability well over a year ago… I am not sure how that was meant to be comforting but I think that’s what he was trying to do. A neurologist now and 2 neuro oncologist have now tried to get me accept that I’m not omnipotent and that was more than a little frustrating. Furthermore, like almost every doctor I’ve seen, he had an intern watching the entire appointment. And then afterwards, the uninsured bill came… he tried to sit me down with a financial advisor but at the end of the day, every single program they have I don’t qualify for because I have that 20K in the forced retirement that the county was taking out. I told them straight up and I stand by this that if I have to decide between me taking those 20k today or dying, dying is the option. Because simply put, if I die tomorrow Kiana gets $400 a month for the rest of her life and that’s $320k or so if she makes 70. I am not leaving my daughter broke and I have exactly zero apologies for that. He found the results from John Hopkins, Duke, here so fascinating that he asked me to sign a waiver that would allow him to present the case to 20 something neuro oncologist that are having a conference. Having an unusual mind is… interesting and frustrating. And then while we’re playing with some things, he put me on a driving restriction. He was frank that it could be a short time, 6 months due to Texas law or perhaps indefinite. I was and am less than thrilled. I called and cancelled the counseling sessions from Livestrong and their cancer and transition class trying to, as I did the first time I had a driving restriction, save the rides for what’s necessary. I told Kiana that I can’t drive for a while and I told Kiana’s mother so she heard it from me and not her. She wanted more medical details from me but under past circumstances I said I’d be happy to do it in a confidential setting like a counseling session but that I wasn’t going to do it over text messaging.  
Last night I sat and did lumosity till late at night and pondered a couple of things. One of those was the theory that one of these doctors came out with that the damages is to the hippocampus which could affect all the things that appear to be going wrong, facial recognition, working memory, other memory functions. The frank truth is that I noticed some of these things were getting better when I was hanging out with a girl and as I discussed that with a doctor, they said that it’s true that emotional stimulation or whatever you want to call it can make some memory functions better. I don’t know, I sent an email thanking everyone who had helped in the BrainPower 5k, copied below:

Above all, thank you for your donations and support! Thank you guys for supporting the cause. Some of you guys put in honor or support or honor of me and I appreciate the support but it's you guys that deserve the honor. As we all know humor and running are how I get through the day... so it was perhaps fitting that the guy who doesn't quite have his spatial orientation got lost on the course:) There will be other 5k's but our team raised more money than any other team and that is incredibly important so let's not miss the forest for the trees. But some of you guys also had some great dedications of humor from my brain and to me the funniest one was the one that was done in honor of George Clooney. It's been a rough 2 years and we all know that but I'd rather have rough times with you guys than good times with others. If getting brain cancer helped me get to know you period or know you better, I'd sign up all over again.

And I believe that to be true. And I am not sure I can ever sign up to put my emotions out there… but then again the hopeless romantic today heard and downloaded a song today remembering what the album is called “the wonders of the younger.” No one is worried about cancer right now. In fact this new guy thinks MRI’s at the six month or 1 year mark and now they’ve all finally started to focus on what I was focused on day one, getting my brain back or at least as I told the Duke doctors for them to tell me that these functions aren’t coming back.

Thinking about all of this last night, I stayed up too late and over slept a bit. Kiana never wakes up on her own and this morning was a bit more challenging because we had do it fast to get her to school on time. She looked up at me from her pajamas and said, “Dad, when you wake me up too fast, I don’t get to finish my dreams.” These doctors are doing their best and trying to help but getting restricted from driving, being told to go on disability, nodding to me that maybe this is as good as it’s going to get feels like they are waking me up too fast. 

The DARS program I met with was fairly realistic that if this driving restriction stays too long, a lot of jobs become less available. They encouraged me to try some stay at home jobs… the guy who never was a home body encouraged to stay at home…

I don’t know. I may be a long way from home and maybe getting woken up too fast but I am going to encourage my daughter and try myself that even if some dreams have to be modified, I still intend to finish them.

Wednesday, September 12, 2012

Conflicting Emotions

A friend of mine who reads this blog on occasion and is a professional therapist recently wrote a blog about how men in particular struggle with the reality of being human. It was about 4 men struggling with cancer, one of them myself

This is demonstrated over and over in my last couple of years… this makes for good stories, the guy who sneaks out of hospitals to go running, who puts off brain surgeries to run marathons and qualify for Boston, the guy who wins Austin’s first ever brain cancer research race. And let’s make this clear, I’m proud of that and the reason I did that was through hard work on the body… But a quick overview of the patterns of last year tells you something, I want to hold onto what’s important to me as much as I can. But like many things in life, some of that’s not really demonstrated until push comes to shove, until you can only choose one because in life you can’t have everything. The first time that Livestrong had it’s cancer and relationships class I went because there was no conflict, the second time, I had a track meet and I chose to go there instead. I went to a wedding in Miami and ended up leaving early because the hurricance could cause me to miss my daughter’s first day of school. I am already signed up for wonders and worries parenting class and I won’t be missing those… 

Yesterday, I went to DARS and because of some of my doctors medical concerns right now they want to limit some of the job possibilities… I went to meet with a counselor for Livestrong and signed up for the men and transition classes. It’s an exercise class where men who have lost different functions workout and then talk about some of that. For most cancer patients, it’s physicality and they talk about some of those losses. For me, clearly that hasn’t been lost but I am hoping that somewhere in the echo of their emotions I find some touchstones of hope. I signed the disability thing yesterday and today I meet with Austin’s first ever neuro-oncologist and we try to figure out this thing that we’ve been trying to figure out for oh 2 years now. And the continuation of the conversation of playing with meds continues… a conversation very annoying to the guy who didn’t take pain medication after a biopsy and a surgery… 

Still, I walked Kiana to school today as I have all but 1 day since it started. I read to her last night and argued with her this morning about how if she doesn’t get up promptly she can’t redirect me on the fact she doesn’t like what I made for breakfast (here’s where you chime in about how she should never be able to redirect me, she’s been getting in trouble some at school for correcting the teacher and we’re working on it but if there’s anything I’ve learned from this cancer experience that I thought well before all this is that even the smartest people are nowhere near the correct answers sometimes). Last night I went to the toughest trackwork out I’ve ever done, 4.5 miles of speed work. 

The year before this all started I went to Costa Rica, Italy, Toronto, Florida and Philadelphia… since then well, I haven’t been much other than cancer related events. That’s not lost on me and some days it’s harder to absorb it than others. But the entire time, Kiana has gotten to keep the roof she was born into over her head and have food on her table (even if it’s not always exactly what she wants). I’ve continued to help the communities like ultimate and running that I was part of before all this started and tried to contribute to the ones I joined since, the cancer in general, brain issues in specific, and starting next Thursday the PTA. I hope my deathbed is far away but whether or not it is, a few days after a brainpower 5k which didn’t go my way, I hope that’s where my brainpower is focused on.

Monday, September 10, 2012

The Forest and the Trees

So in the first hiccup in my life ever, the Brainpower 5k did not go how I had hoped. The simple truth is that there were multiple people whose fault it was, mine primarily. I was on pace and would have absolutely broken 18 and possibly won it (2 guys were in front of me when I got lost but I was saving it till the end and had plenty left). Yet I missed a turn near the end and don’t know how I did it but  joked around that one of my noted deficits is spatial orientation. In the end my GPS watch said I’d done 3.5 at a faster pace than it would have taken to break my goal and close to what the winners got but I came in at 20. If you think I was happy at the end of that race… you don’t read this blog very well. But I took and walked a lap around the track… walked back to the end, cheered some of my teammates in and then went back out on the course with my running stroller and finished with my mom and my little girl.

I feel bad both about my own ending to this race but I feel worse because I helped with the organizing and brought a few more serious runners than last year and didn’t do enough to help with those logistics so some of those guys who actually won their age group didn’t even show up in the results. Maybe I should have encouraged them to make sure if it was actually a race to do it with chips or maybe more like some other charity runs where there are no prizes for the winners just completion… But even as I got frustrated afterwards, one of my teammates pointed out that doesn’t matter what your time was, we raised over $2000 for brain cancer research. And that’s right. Now the overachiever in me wants to make sure we correct some of the other things for this year and more carefully balance the fine line between a race and a fundraiser…

My coincidence the new neuro-oncologist was there speaking and I spoke to him during the event and we are going to set up the appointment. Like the neuro-oncologist they were more concerned with the neuropsychological evaluation than with the MRI since that’s looking solid. And there I might have missed something, my IQ is in the 99th percentile but parts of my working memory are in the 12th and 21st percentile. I keep focusing on the positive and trying to ignore some deficits but they are not mutually exclusive. Being both over and under cautious with anything can lead to trouble.

For whatever it’s worth, now that I have no health insurance, it’s a whole new ballgame to negotiate and navigate the healthcare system… I don’t recommend it either way.

But the brainpower 5k was a winner. As I drove there I realized that with twice as many participants, twice as much money raised, I am taking almost 20 friends and family that didn't run it last year. Not even at the start line yet…I was well ahead of last year. Damaged brain but the heart still works. More importantly than all of those, this was my mom’s first race ever as we train for a half marathon! And we crossed that finish line with 3 generations!

But look, let me say this straight forwards, I’m still planning on breaking an 18 minute 5k sometime. And a lot of the last 2 years has felt like dealing with a lot of demons in  hell but appropriately I was reading some of Dante’s inferno:

By such a curse as theirs none is so lost
that the eternal Love cannot return
as long as hope maintains a thread of green

So there are moments where I think not breaking an 18 minute 5k is a bigger deal than the fact that we raised a lot of money. And there are times where I get annoyed at Kiana’s mother for being less than adequate at being so but then remember I get to walk my daughter to school everyday. And there are times where I get annoyed at some neurological functions lost and tell the doctors, I didn’t fight this just to keep breathing and then as I wake her up I realize that with every breath of mine, I get to watch one more of her. So I’m still wet behind the ears on a lot of this and some days like the 5k today that I’d trained so hard aren’t going to go well but… some of that hope still has a thread of green. 

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.