Waiting on Tomorrow

Photo Credit: kentishmayde via Compfight cc

Seizures are a real pain.


Though there can be a real, live “pain” component involved (when we bite tongues, bash into walls, strain muscles, etc.), what I am actually referring to here is the more “major inconvenience or imposition” kind of pain. Like when Aunt Gladys won’t shut up about her new fabulous colon cleanse diet just as everyone is sitting down to Thanksgiving Dinner. That kind of pain.

For the past several months I have been slowly getting my act together – Blogging daily, getting the HawkwindScho Twitch channel off the ground, even beginning to write articles for a major Hearthstone website. As the seizures came in, I dealt with them, worked around them, and moved on with whatever I had been doing previously. But, this past week, the Seizure Demon decided to return and show me who was really calling the shots around here. Out of the past 7 days, 5 of them have been filled with seizure activity. I have failed to write several days worth of blogs, missed an article deadline at Hearthstone Players, have been completely unable to do any streaming whatsoever. It is almost as if my disease took it very personally that I was making some headway, and decided to smack me in the face as payback. Not much fun at all.

As of yesterday, I have a new neurologist/epileptologist who is interested in more aggressively pursuing alternate treatments – “Are you satisfied, living with intractable seizures?” is the question he asked me bluntly during our initial appointment. Of course, I am not, really. But, after 11 years of this, you get kind of used to it, I suppose. You learn to live with whatever your malfunctioning brain throws at you: inability to work, inability to drive, incontinence, periods of general stupidity, lack of anything resembling a functioning memory, the social stigma that accompanies having this type of disability. But the thing you learn to live without the most is hope. To hope for an improvement in your condition is to set yourself up for a thousand pounds of pain falling on you from a great height when the latest and greatest treatment also fails to have any positive effect on you. My Vagus Nerve Stimulator brought my seizure activity down from “suicidal thought inducing” to something more like “manageable.” Since its installation in 2009, every other light at the end of the tunnel has proved to only be yet another oncoming train.

As of yesterday, though, I have agreed to take some shots back at my condition. The voltage on my VNS got adjusted upward, meaning I have searing pain in my throat and head every 5 minutes when it triggers. ┬áIs pain worth more seizure control? I believe it is – the body gets used to pain. I have also started on yet another new medication – one that supposedly has no mental impairment side effects. Given the perpetual fog that the 2,000 MG of Tegretol I live on every day has left me in, I could not accept even more damage to my thinking and memory. But this new one’s major side effects are upset stomach (got that already), headaches (already all day every day), and hair loss. Am I willing to live without hair in the name of better seizure control? Sure, why not. Lor says she doesn’t love me for my hair anyway – and what other person do I need to impress with my looks? Hair loss is why God invented hats. I have a lovely collection of MLB baseball caps I can start wearing, should it come to that.

So, why this post today, instead of a normal gaming post? I wanted to let all my readers know what has happened over the past week to my normally regular routine, for one thing. But, mainly, I wanted to tell my friends and loved ones that read this blog regularly that I haven’t given up just yet. I am not yet resigned to life with intractable seizures, and am still willing to shoulder the burden of hope for something better down the road. Epilepsy has been a part of my life for so long now that I can’t even really imagine what life without it would be like. But, I am still willing to find out.

Waiting on Tomorrow,

– Hawkwind