Sunday, May 20, 2012

A Change is Gonna Come

The guy who puts off brain cancer surgery to run a marathon is not going to be the world’s best listener. Simply put when this all came, I fought change. I sat and re-evaluated my life and realized I liked it. Even when asked what I would change, the only thing would be to get that bad ass tattoo. But still now it has been chipped away, the job, the finances, the wife, the brain. It’s interesting to me that many people in crisis choose to change the path of their life, in crisis, I tried to keep it but it changed for me anyway.

I sit here and review the emotions and the ideas that came when this diagnosis first arrived. First, it was a lot of vagueness of course. The biopsy was supposed to have a variety of possibilities, it was either benign or cancerous, if it was cancerous it was probably grade 1 or grade 2, if it was diffuse astrocytoma or oligodendroglioma. Out of all the possibilities, I came back with the worse of each scenario. My job would move me to a different place, from having my own office to a place that I sat in cubicles, from carrying a load of work to a department that can only be reactive to arrests. So on a slow day, everyone enjoyed the lighter load but I just had time to sit and think about all that had happened and that I was probably going to die of cancer when a few weeks before, I had never even called in sick. The move occurred without any conversation to me after I’d been sat in an office being told to have no contact with kids (this was later explained as there having been an error in paperwork). The move was justified by my driving restriction despite this not being the policy at the time (but due to me appealing it, the policy has changed). I would file a claim with the EEOC with the conclusion that it wasn’t clear but that I could sue if I felt it necessary and to watch out for retaliation. I never sued because this dragged out even longer than the diagnosis to surgery time, government wanting to be always thorough and, who will ever know why, but within a few days of when I was cleared, I was put back while the investigation was still going. I had fought for my job back but the truth is we’ve never gotten back to the same place. My boss, in what I believe was a genuine human gesture said the exact same thing that Sean, the guy from my running group would say a few times while providing a ride to marathon training, you should be just focused on keeping food on the table however you can get it there.

My wife at the time was sending emails that I would not notice until after she left. They were long emotional ones, with songs attached and I responded with only a few lines. In my emotional moments, I turned to other people, in my mind trying to lighten her load. People would notice she was losing weight and seemed stressed; I was reading about the world’s best neurosurgeon hoping a surgery would change me minimally.  I was trying to treat cancer like data, like I had done too many things. She wanted to sign up my daughter for the Wonders and Worries counseling program which genuinely helped her when I had them help this year. I fought the change.

I wanted my job to understand that cancer comes with emotions and to not let their logistics get in the middle of that. I wanted my wife to understand that cancer comes with logistics and not to let her emotions get in the middle of that. Well, that’s obviously not turned out real well and frankly, while there’s no conclusive way to ever know this, I think both were turned off and turned away with that. She would find someone who was listening to her emotions. My job and I have never had the same relationship since then, if demonstrated by nothing else other than that my supervisor and her boss, unlike previous Christmases received nothing like bottles of wine etc as a thank you nor vice versa. It had become a professional relationship only and perhaps the double sided suspicion helped none of it be fixed. I asked both personally and professional months ago for a way to improve it but it was disregarded despite the request actually going into my personnel file. Relationships are built on trust, no matter how much love there is. In neither of those relationships did we rebuild trust or love though I still love the fact that I got to share part of my life with each of them, years of it. When it came time to go Duke, I had actually originally asked for vacation because we had communicated things so poorly but eventually would tell them beforehand and go on FMLA. I loved the job enough (and also wanted to save medical leave in case it was ever necessary) that I did not leave the Duke hospital until we were agreed with paperwork.

When I was found collapsed on the side of the road, I told them the same thing that I put on facebook that I may have had a seizure and that we were doing some medical appointments. No one saw what had happened and like too much of my life, the results were inconclusive. I told them the same time I told Kiana’s mom and the two things that were not healthy during the cancer process were tough to communicate with them or to trust them appropriately. When Kiana’s mom left, I wanted to fix things, to not throw away a history and I’m trying to do the same with my job, appealing it to get it back but it may show my naivete to think that such things can be restored. The reason my termination letter states is a mistake I honestly made, an incident which was, of all things, a memory lapse. I’d share more but I worked in the juvenile court system and there are of course legalities.

I fought change so hard when this came because (you can insert you diagnosis here) I liked my life. Someone would approach me who wanted to fix something from years back and while I gave it consideration, I didn’t do anything about it. My job got moved and I wanted to just get my job back. Eventually my wife would leave and I tried to get her to stay. I hoped the smart kid would come out all with my executive functions. But it all changed; it all still changed.

I’ve referenced in here getting old but in many ways I’m just growing up and having to accept change. I’ve never really been in the job market as an adult; I’ve never really been in the dating scenario as an adult. I am volunteering as a running coach for some people training for their first marathon. I have cycling workouts and learning that it takes more of my brain than running did. Kiana is asking questions that I have no clue about and I’m having to do research. I’ve received notice her mother is moving in with her boyfriend and wonder what questions will come from that. For each of these things, I’m having to take guidance and learn to listen better. I’m a long way from home and on some of those I have no idea where home is.

I liked my life but it’s in many ways so far gone from what it was 18 months ago. I volunteered to run a tournament that I started several years ago and it was it’s most competitive ever. I got to watch the director of the Brainpower 5k sharing her brilliant ideas and receiving them from the Livestrong Marathon director over lunch. I am going to finish my commitments, the Brain Power 5k and the Livestrong challenge. But I’m honestly thinking it may be time to quit and change and lay down. That decision hasn’t been made but maybe it’s time.

George Bernard Shaw wrote that The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man. By me being unreasonable, policies have been changed at my job and some modes of operation have too that I believe have improved the place. Tournaments have started and grown. Money has been raised for charities and people have been “inspired” to run 5k’s and half marathons and marathons. But it’s also cost me some things and someone that I loved and now, perhaps even more than my medical bills, it cost me my livelihood and health insurance.

To me giving up means becoming the reasonable man, adapting myself to just fit in. For a kid who not fitting is the norm this is as frightening of a change as cancer. The kid who started a science club in junior, the kid who was the first in his family to get a college degree and went to California where he know no one to do it, the kid who volunteered in the South Pacific for a couple of years after college, the kid who moved to Austin where he knew no one,  the kid who before this all started had been to several countries and places with his wife and child with spare money and then saw all the spare money disappear and half the income move out of the house and has not really been anywhere on his own dime since. There are of course middle grounds between being reasonable and unreasonable but I am not good at those.

I want a hardcore relationship if I’m in it. I want my best time when I run a race or in Boston if I can’t get it, turn it off and have a great time otherwise. I want a job I believe in but also pushing to make myself and the system better in. Maybe these things don’t exist for me any longer. I sat and cried with someone on a park bench on Friday and wondered out loud if maybe it’s just time to give up.

I tried so hard not to have my life ripped from me even as parts of my brain were. I am appealing the job but like the surgery, I’m assuming the worst. A lawsuit is being considered but a legal remedy to a place that I loved is tough to consider. So I looked in the mirror today wearing an old set of shorts and jersey and wondering if the guy there is going to become reasonable and the guy who I fought so hard to keep alive is going to just be someone that I used to know.

I pray and hope I’m wrong that change will be improvement. But this tale is not about victims and villains or heroes. It’s about that things are nuanced and subtle. Perhaps, I’ll be better with less cancer, find someone I can love just as much if not more, a job I’m as passionate about. Today those thoughts seem improbable. Dark thoughts certainly make me think that maybe the universe was giving me a hint that my spouse and my occupation fit in better with someone replacing me.
This is a dark place. I haven’t given up yet and dare to dream I won’t ever do so. To quote a Mariah Carey song:

If there's one spark of hope
Left in my grasp
I'll hold it with both hands
It's worth the risk of burning
To have a second chance

People came up and hugged me today for running the tournament. People have offered to help with the resume and given some career tips. People have told me stories of when they were forced to change jobs and are glad someone made the decision for them. Like cancer, this seems like a low probability of success to me. So while battling fear of change, which is and perhaps always was coming anyway, I hold on to those sparks of hope and we’ll see if this risk of burning gives me a second chance. 

1 comment:

  1. Don't give up, J. You've got a lot of life ahead of you, and a lot of love to give.