Posted by: 1of10boyz | April 12, 2014

10 years – A Milestone and a Quandary


It has been 10 years, not that it really seems like that long, but in the same breath it seems like it was forever ago at the same time. Lots has happened in those 10 years and much of that change is obvious and easily discernible, much seems to have stayed the same, but then nothing is ever the same; NOTHING. It is as if there is a monkey on my back.

It was 10 years ago this April that I returned to work after having had a brain tumor removed.

Tumor

Not my head but it looked just like this. Eyeballs on these scans are really freaky in my opinion. The tumor really is that obvious on an MRI with contrast. No medical training required to spot them in my opinion.

Oh, it wasn’t but a thing, just a little Vestibular Schwannoma or an Acoustic Neuroma or neurolemmoma, you know something like 175 to 190mm of nonmalignant nerve sheathing that decided to grow out of control inside the middle of my head. I thought little about how lucky I really was to have skilled surgeons, neurosurgeon and otolaryngologist, and to be thinking seriously about life returning to normal. I still had some hearing in my left ear, the equivalent of a 70 year old man’s (I was 40 at the time). My balance and equilibrium had returned. I didn’t see any change in the mirror, my face looked normal, though my wife can still tell when I get fatigued and my left eye will droop just a little, I don’t or chose not to see it. Life appeared to be normal. That semblance of normal might have more than a little something to do with this monkey of mine.

I remember feeling like I was ready for life to be normal again; God knows it hadn’t been for the previous 8 or 9 weeks. I was ready to pick things up right where I left off; really, I didn’t feel like anything was different. My energy levels were the same. I was, in fact, feeling better than I had for several years; the headaches and nausea were gone. I had been driving myself crazy from lack of things to do around the house and needed to get back to work for my own and my wife’s sanity. The doctor gave me clearance for a reduced work week and allowed me back to work for a few hours a day. I was slowly able to make the return to work and life appeared to return to normal for all those around me. However, I have to admit that it wasn’t the same as it was before the surgery; there is always something there with me just like the ringing in my ear, that monkey never leaves.

The monkey haunts me in many ways. Some days it is that my good fortune may run out and my life will fall apart. Other days it is the fear that the tumor will return or that it will occur in my other ear; since there is no known cause there is never the assurance that it won’t happen again. There are good days when I don’t even think about the monkey; the days when I am aware of him and realize that life is a precarious balance are days when I truly battle with the monkey. The monkey never leaves, I can ignore him and I can mask him but I know the monkey is still there. I struggle on those days to remain the optimist and to overcome the pessimist; when I am the pessimist the monkey wins. I really hate to lose and losing to the monkey is the worst thing.

I have learned many things over the past 10 years of dealing and fighting with the monkey. I have learned to do a better job of thinking about what I say before I say it; maybe that is just part of having gotten older. I am much less likely to use profanity than I was some 10 years ago; maybe that too is just from getting older. I don’t know that it is fair to say that just because I have gotten older and mellower or if it is because I try so hard to remain in control and to keep the monkey small and unable to influence me. I maybe that I am now so conscious about communication problems and trying to be understood here in China that I will think about what I am trying to say and trying to use words that my colleagues will understand.

I also find that I am less likely to use idioms to express myself here. While it sounds odd since I am talking about a monkey on my back and that is an idiom but this is how I would describe it. The problem with idioms and their use is that they are not easily understood; I know that this idiom describes what I am feeling but it leaves too many people wondering if they understand what I mean. In fact, an idiom really doesn’t mean the same thing to everyone, which is what makes it hard to really explain and to get the same meaning. When someone else uses this expression it likely doesn’t mean to them what it means to me. I know what this monkey feels like, I know him as well as I know myself because it is MY monkey. I should really name him since he will likely be with me the rest of my life.

I know it is not very creative but I think I will call my monkey, George. There are a couple of reasons that I like the name George for my monkey. First, he is a lot like the monkey from the stories of Hans Augusto Rey and Margret Rey in that he is curious; but unlike the Reys’ monkey, my monkey’s curiousness is more in the sense that he is peculiar and odd. Of course my monkey is peculiar and odd, he is my monkey and he is made of all things me, he could be nothing else but peculiar and odd. Second, I am a product of my exposure to so many different things and one that really sticks out is Saturday Morning cartoons. I am talking about back in the days when there were 3 stations on our little (meaning very bulky and cumbersome CRT – sits on the floor occupying some valuable real estate in the living room) television set. Those Saturday Morning cartoons always had a least a half hour of Mr. Bugs Bunny, and he of course had his wrong turn in Albuquerque or in this case East St. Louis to lead him into such adventures which included a visit to the Himalayas, where the Abominable Snowman names him George. Of such is the wandering of my mind and the decision to call my monkey George. So I guess that means that I am feeling a little bit “man in the yellow hat” and the not so bright Abominable Snowman; yup, that sounds about right.

BB1

I don’t and won’t love him, and squeeze him. I will accept that he exists.

BB2

I will call him “George”!

YH1

I guess that is why I don’t wear a hat very often, the monkey is always messing with it.

Yellow Hat

I guess that is what it was liking discovering my monkey. He is always there.

My monkey, George, represents all of the hopes and dreams that I had before the surgery and all of the fears since the surgery. He is often as quiet as a mouse and on rare occasions as loud and bothersome as parade in my living room. He affects me in many ways that I have just come to accept as part of my “new” life. He is always there. George and I struggle. He is there to remind me that the experiences that I have had for the past 10 years are often miraculous given how things could have turned out. He taunts me with the fact that I even know what a Vestibular Schwannoma or an Acoustic Neuroma or Neurolemmomas are; not something this engineer every expected to know anything about. That I even know that there are twelve cranial nerves and what most of them do proves that I know more anatomy than I ever intended. I know that there is something called a vestibulo-ocular reflex (VOR), also known as the oculocephalic reflex, and I know from experience what happens when it isn’t working correctly. That knowledge is what gives George his power. George knows what those twelve nerves do and their proximity to Nerve VIII and the propensity to malfunction of my Schwann cells. He knows that I am as odd as 1 in 100,000 worldwide (3,850 people like me in America and 14,000 like me in China) because my vestibular cochlear nerve malfunctions make me that way.

I have learned a few things over the past 10 years living with George. My next post will talk about what George and I have learned together, and what I have learned from having George with me.

Up next: At least 10 things I have learned from the Monkey named George.

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Responses

  1. Danny and I were just talking about your brain tumor earlier today. I didn’t know you had had one. A lady in our ward just had one removed two weeks ago, which is what brought up the topic.

    • Thanks. Life looks normal on the outside and for all intents and purposes most people will not be able to tell. Proof of that in my sister-in-law not knowing. A really short haircut will show the scar behind my left ear. George knows though.

  2. […] I thought about what were the things that I have learned in the past 10 years, 10 years of post-brain surgery, I knew that one of those topics would have to be on what was and […]


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