Tag Archives: neurological issues

General Posts

Another Nameless Post (I’m sensing a pattern here)

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The Brotherhood of Dwarves - Book One
The Brotherhood of Dwarves – Book One

It’s Dragon*Con weekend, the location of my greatest triumph and biggest humiliation of my writing career. In 2009, I was accepted to DC as a Guest — not a Pro or any other designation but a full-fledged Guest — as an independent author. It was quite an honor for an unknown hillbilly with no agent, publisher, or PR firm greasing the wheels on my behalf. On the other end of the spectrum, in 2013, I had to withdraw from the show because the crowd overwhelmed me too much. Despite that low point, DC will always have a special place in my heart because of what it signifies in terms of credibility in my career.

Right now, with my health deteriorating daily and the nightmare our healthcare system has become, I doubt I’ll ever top that accomplishment. Because I spent my life teaching instead of pillaging retirement funds, I cannot afford all the expenses to find out what is wrong with me, let alone receive treatment. I’m trying not to be bitter about that, but it gets harder every single day. I feel used up and discarded by a system too short-sighted for its own good. Any country that punishes its citizens for working and attempting to be productive deserves whatever misfortune it brings upon itself.

I’m still optimistic that I’ll be able to write book five and complete the Brotherhood series. The people who have stood by me and encouraged me over the years deserve to have the final installment, so I will do everything in my power to finish it. My fine motor skills are eroding, which makes typing difficult, but I ordered an oversized keyboard with 1″ buttons. It makes typing a little easier, even though I’m still having to retrain myself on the location of certain buttons because of the size. Concentration is also something of an issue, but I’ll have to find a way to overcome that. I will complete the rough draft or die trying. I mean that quite literally.

All things considered, I’m keeping as positive an attitude as I can. I refuse to feel sorry for myself over this illness. Even though I’m angry at our inane system, with or without treatment, the illness itself will not hinder me from striving for my goals. It may slow me, but it will not stop me. I may never make it back to Dragon*Con, may never be invited to ComicCon, and may never know that success in this life, but I will complete the Brotherhood series and produce a couple of novellas for the Outlaws.

I’ve learned from previous experience that people will reveal their true feelings for you when you endure real hardships. Those who truly love and care for you will offer support and encouragement in whatever form they can. Those who see you in terms of what benefit they can reap from association will stand back with indifference. They may occasionally utter a word or two of support, but that’s as far as they’re willing to go. Those who harbor malice towards you will kick you while you’re down. I’m blessed and grateful to have a handful of true friends who will have my back no matter what. They are the only ones who matter.

General Posts

First World Whining

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I keep seeing social media statuses that are some variation of “I’m so tired of seeing this ice bucket challenge.” Those poor people whose lives are so wrought with tumult that they have to endure a Facebook or Twitter newsfeed filled with people spreading awareness of a lethal neurological disease. How will they ever endure such hardship?

Nevermind that before this challenge began most people only had a passing acquaintance with ALS and some vague association of it with Lou Gehrig and his famous speech. Nevermind how much money has been donated to the ALS Foundation over the last two months. Nevermind that the reason this disease needs more awareness is because, despite the horror of its 100% lethal degeneration of nerve endings and voluntary muscles, it doesn’t affect enough people to warrant attention from pharmaceutical companies because there aren’t enough profits associated with treating it (that sentence alone pretty well summarizes everything wrong with our current healthcare system). No, the real travesty is that innocent people have been burdened with unwanted videos clogging up their social media feeds.

As the world teeters on the brink of war with the tensions in Gaza and the Ukraine and the United States, god forbid people come together and try to do something positive for others. As people die in Africa from the worst Ebola outbreak in history, god forbid human beings be so selfish as to record themselves dumping ice water on their heads and challenging their friends to do the same in the spirit of charity. God forbid sports celebrities make the news for something other than domestic violence or substance abuse. God forbid people display an act of humanity whether they fully understand the seriousness of the disease or not. How dare they clutter up the internet with this drivel!

The Ice Bucket Challenge represents the best and worst of America and humanity. On the one hand, the sheer volume of money raised for the foundation is staggering. Over $50 million at last check. In two months. That’s what people can accomplish when we come together, which is beautiful and inspiring. On the other, selfishness rears its head as certain people whine (and there is no other word for it, really) about the inconvenience of having to endure so many videos. That self-absorption, closed-mindedness, and judgmental self-righteousness is everything pushing humanity to the brink of extinction (and I don’t think that’s hyperbole; our situation is that dire). It’s funny how something so simple can become so much of a phenomenon and reveal so many layers of humanity.

For the last three years, I’ve battled an as yet undiagnosed neurological condition. As I type these words, my left hand twitches nonstop, muscle spasms flutter everywhere, and a host of other symptoms have nearly crippled my mind and body. As such, I have been deeply moved by the Ice Bucket Challenge because at the very least I see my friends and neighbors learning more about neurological conditions, and awareness goes a long way towards finding cures for illnesses (when profiteering doesn’t interfere).  I for one am grateful to see each and every Ice Bucket Challenge video because they represent a sliver of hope that maybe human beings can still rally together to face challenges, and thankfully those who have accepted the challenge and embraced the spirit of giving still outweigh the selfish and self-absorbed.

General Posts

Another Nameless Entry (Because I forgot to give it a title again)

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I have no idea where this post is going, but I feel the need to share something, though it doesn’t quite have shape in my brain yet. Today has been a rough day physically, and I need to formulate some words to make it into something positive.

After my accident in 1989, I had to redefine my life. All of my plans up to that point were toppled in that singular moment, which forced me to look at the world from a different perspective, and even though it took a few years for me to appreciate fully the lessons of nearly dying, it helped me mature faster than I would have otherwise. It also made me feel like my life needed to have a purpose beyond just crass materialism, and that sense of purpose has guided me for a quarter of a century. Because I’m human and fallible, I’ve often come up short of this desire, but even at my lowest and worst moments, I’ve tried to make my life mean something more than my own selfish desires.

I discovered writing as an outlet not long after the accident, within the first year at least. When I started college in the fall of 1990, I did so with the intent of becoming a writer. However, I concede that at that time I had no concept of what “being a writer” meant other than putting words down into some semi-coherent form. All I knew was that I loved language, loved dabbling with words and forms and ideas, and I gave everything I had to the pursuit of learning my craft.

Also because of the accident, I’ve lived my life in a manner so that I will not have many regrets. There are few experiences that appealed to me which I haven’t at least attempted. I’ve rarely left anything on the table, either, and even though I’ve failed at quite a few endeavors, I never have to wonder what if. My one real regret, however, is going to graduate school. If I could change one thing and still have my children, I would never have gone back to grad school because in terms of creativity and writing all it did was stifle my spirit.

That said, I don’t regret teaching. While I lament what has happened to education and the profession, teaching fulfilled that desire for my life to have purpose in a way that only the books can top. Despite every setback and heartache and difficulty, when I place my head on the pillow at night, I know in my heart that I did something more important than having a popular blog or a bestselling book or a viral video; I gave other people an opportunity to improve their lives. I shared a foundation for effective communication with a couple thousand students, and I did that job well. I may never have the level of commercial writing success I would like, and my books may vanish from history forever, but those lives I impacted will continue onward. I can live with that.

Even though this as yet undiagnosed disease is kicking my butt today, I have not lost my will to fight it. Even though I haven’t been able to work on book five the way I need to, I vow that one way or another I will finish it, even if I have to completely reinvent my writing process to do so. Even though I’m just a small voice in the wilderness, I promise to continue to live a life that has purpose beyond my own selfish needs whether I make any dent in the insanity and inhumanity consuming the world or not.

That’s all for now.