My doctors (and I) want me to consider leaving the workforce permenently… the focal seizures, the mental deficits, the waking up in an ambulance twice, some issues with focus, memory, spatial orientation. They are all true and have been since the surgery, but I can be funny or eloquent when I’m uncomfortable (after all this is the guy who the last thing he said to his brain surgeon was I’m going to give you a piece of my mind) but on scientific terms cumulative damage to the left temporal lobe and hippocampus in both Duke and local doctors opinion warrant disability but I am just not the kind of guy who lays down?
I am sitting here on Labor Day, a few days away from being having to decide whether or not to sign a document accepting that. I’ve been sitting talking to friends at some parties over the weekend. One of them I had lunch with one on one after a big party and she said that the girl next to her said, “I’ve met J 3 or 4 times and he never remembers me.” I went to cheer some people on at a relay race and a girl who I had sat and talked to another event came and said hello and I pulled over a close friend who knows more of these issues and I’m like who is that… perhaps it says something about mental cognition that the second person I’ve done that with that had the same name as my previous spouse. I went to a going away party where someone came up and hugged me and I asked another close friend who she was. Part of the reason so many people helped is because relationships have always been my primary hobby and I know that my face name recognition isn’t all that it used to be… but but but…If you read this blog, you catch some of the typos but you’ll also see that some of the names are wrong over and over again (the minister I sit with from Stephen ministries is referred to a few times by Job ministries). I’ve tried to take help in every way I could admit, it’s why my cousin lives with me. It’s why I followed guidance from world class doctors. It’s why I follow my coaches, both cycling and running directions and try not to reinvent the wheel or the shoe. When they ask for me run or cycle harder, I do. I joined the PTA, volunteer at many things, try to do some ridiculously cool stuff with my daughter, am incredibly grateful that the dream of walking her to school from the house I bought just for that has come true, 5.5 years later one block away(and she’s gotten in trouble for talking too much, not sure where she’d possibly get that from)…
I want to say, I can still make jokes, I can still carry a conversation! I am bringing a couple of friends to this weeks’ appointments, friends who notice that sometimes I’ll say the same things 3 times in a conversation, when I don’t notice, friends who have seen me get lost. My degree is in psychology and I have worked with mental health populations a good percentage of my life and have always thought it unfair the way they get judged… Am I really ready to say my own brain is that damaged? And really how much self judgment does that involve? I feel fine I want to scream out but am reminded that I felt fine before waking up in an ambulance twice.
Some of these things come with an expiration date… and that’s very close. And the night that I found Kiana was coming, I stayed up all night trying to figure out how to provide for her. And the night I got told I got cancer, it wasn’t dying that worried me. I emailed people trying to get out of all financial commitments to make sure if something went wrong I could leave Kiana as much as possible… And now I have to accept that some of these deficits which cost me a job (the attorney I’ve been working with has been honest that I really did forget something on the stand and I owned it and so the case would be at best difficult and a long haul).
I am the guy who runs marathons, who puts off surgery to do so, who have that all over my medical records, now has to consider that some of the mental deficits left me more disabled than I’ve ever wanted to accept. Both Duke and local doctors realize that it’s not my style but that it may be time to come to grips with some of these things. I’ve talked to some brain tumor survivor, one was a high profile attorney who realized she wasn’t sharp enough to keep doing that and while she kept her law license, she married an old friend (who pays the bills) and volunteers as a lawyer. Two of them started non profits that help out other cancer/brain tumor survivors. One quit and became a stay at home mom. 3 of those 4 accepted leaving the work force in official capacity.
I’ve never been a guy who worked for money… the guy that graduates valedictorian and suma cum laude but works in college with kids with mental illness and then volunteers for 2 years in the south pacific after college wasn’t materialistic. Let’s just say the salutatorian has ribbed me before about the fact that he makes a lot more money than I do. I sit here on labor day and just remember the old saying that work isn’t to make money, you work to justify life.
Can I swallow my pride and take the prejudice against myself if I follow this medical advice? Frankly, if I didn’t have a kid I’d tell the doctors to go do another thing that starts with the letter f with themselves. But if I don’t do it and something goes wrong past certain times (and ironically this doesn’t even have to be cancer, the tumor, the seizures, the medication, the surgery caused enough damaged in the most active part of the brain to where if something goes wrong there, that could cause even more damage), then what I stayed up for the night I found out she existed and the night I found out the tumor existed… then I leave the princess of the universe with very little. Let me put this as frankly as I can, if that occurs, well even if I am alive another while after that, the cancer won. I have till September 11th of all days to decide this and then of course there is the paperwork that it all has to go through so like anything it's not something that will settle soon.
I’ve sat with some people I trust and most of them who see me regularly see these deficits and have for a while and remind me that in many ways, I am uninsurable so that I should seriously consider taking it… I don’t know, I don’t know. They let me know that above all things that my pride seems to be my biggest obstacle because both Duke doctors and local ones are giving me sound medical advice. The Livestrong advertisement is in a local magazine so several friend have mentioned it and that is an incredibly conflicting thing for me. If I do this, am I still living strong? But the ad is also about how my mishandling medical issues caused family problems and if I don’t do this, am I repeating that mistake?
This is the conflict I have to solve in the next few days whether eloquence and employability are the same thing especially when the conflict of ensuring some things for my daughter and insurability have a factor.