My journey

Per the advice of the mods (thanks for moderating a rowdy and tangled web of history at least from this guy), I’ve created my own thread. I sit here after 3 rounds of gamma knife from the University of Alabama at Birmingham. I have had a craniotomy. I have had a regular shunt and then had it replaced by a VP shunt in 2010. I have had my shunt tubing blocked in my abdomen leading to surgery to remove my appendix and part of my small intestine removed. I have allergies to phenergin, dilantin, morphine, and loritab which as you might imagine creates a bit of a problem when sedated. Basically, I’m a mess. Now I’ve lost vision out of right eye and most out of my left caused by holdover deterioration from brain surgeries not my damage to my retina as I’ve had my retina’s checked at Duke Medical Center.

I’ve had other surgeries I’m sure but suffice to say I’m not well. I’m 39 at the time of writing so as I tell my wife and children, “dad’s getting the hard stuff outta the way now so he can retire and relax.” Of course I know that’s probably a fib because the shunt hardware won’t last that long and having hardware in my body seldom works that great (see shunt replacement in 2010). I had abdomen surgery to remove my appendix because scare tissue was wrapping around the shunt tubing. The reason for all this though, at least I think the reason, is a greater purpose than just a happy life.

As I was a “computer guy” working on computers and helping people with their computer problems, I went to college for a degree in that. I had a bleed in 2000 that forced me to relearn to walk, talk, read, and write. I went to a different college after bleed and graduated with a BA in Biblical Studies. I pastored a small church for 5 years during which I had another bleed in 2010. This caused me temporarily to lose my driver’s license. Still wanting to finish school I enrolled in a masters program online and working full time finished my masters degree. Sounds great right? Except after enrolling in an Educational Specialist degree I had another bleed (that’s 3 in 2017). You should see a pattern. I then applied for disability and after appeal was accepted on permanent disability.

Again, this has not been an easy road. Now I’m a patient at Duke medical where they have done the angiogram, found what they thought was another AVM, but it was just an anomaly. I have surrendered my dreams of having a career. I’m have surrendered my dreams of traveling the world. I have surrendered my dreams of providing a comfortable life-style for my wife and children. In light of all this though, if I had it to do all over again, I don’t think I would have changed a thing except to buy an independent life insurance policy when I was 17 (:stuck_out_tongue:

I say all this to let you know if you’re out there, that life throws some screwy curveballs. Life also may not take care of all the lose ends! I would recommend you have a plan that is subject to change. I would recommend you have a family that understands your struggles before you get to deep in the mire. Finally, I would recommend that you place you trust and rest in someone other than just yourself (the best option is in Jesus Christ imho). I’m done ranting, but I hope that you understand I wanted none of this, but if I had to do it all over again I wouldn’t change a thing.

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Paul,

Thanks for that. I had a read back to 2008 earlier (which, as you say, isn’t that long ago and you’re not old) and you were remarkable in your positivity. I read that as almost exclusively driven by your faith but with times being really quite hard for you now, I was concerned as to how well you are doing “spiritually” or “in your mind”.

However, your post above is still very encouraging: you still sound quite positive, despite what many of us would consider an especially rubbish set of cards being dealt and difficult times being had.

I’m very pleased to learn that you did finish your MDiv.

So… what can I say? Well done? Some of your earlier posts definitely deserve re-reading when you get to some of the more difficult times.

I’m not currently a believer, so the best I can offer you is love and very best wishes for the future. However, you can have that in spades.

It’s good to hear from you because you’re just as important as all the folk you cheer along the way here.

Love. And best wishes,

Richard

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Hi Random, No need to tell you that you’ve been through the wringer.
As far as buying a life insurance policy…I’d say you’re in the process of buying an “after-life insurance policy.” You’re giving your family a legacy that they can be proud of. (They will have that whenever you decide to “move on”.) Isn’t that what it’s all about? Greg

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