I just finished re-reading two of my favourite books, the first two parts of the Eldarn Trilogy by Robert Scott and Jay Gordon — The Hickory Staff and Lessek's Key — in anticipation of the publication of book three of the The Larion Senate. For some reason I happened to glance at the acknowledgement page in Lessek's Key and realized I must not have done so before. I'm sure I would have remembered seeing my name prominently displayed in the acknowledgments before.
After the initial thrill of seeing my name in print passed (hey, you never know when and if it will ever happen again, so you clutch at some pretty paltry straws in the name of providing balm to a bleeding ego), I finished reading why my name, along with three others, was being offered separate distinction.
Last year (2005), while Jay and I were busy telling Steven Taylor's story, there were many people who took time to tell Jay's. His family and I are indebted to all of them by my sincerest appreciation goes to Heather Nicholson, Tali Israeli, Sam Altman, and Richard Marcus…I know Jay appreciated their efforts as well. Acknowledgment Lessek's Key Robert Scott and Jay Gordon.
Jay M. Gordon was diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Lou Gerig's Disease in 2002 and shortly after began work on the writing of the Eldarn Sequence with his son-in-law Robert Scott. When he died in November of 2005 The Hickory Staff had just been published, Lessek's Key had been handed in to the publishers, and the first draft of The Larion Senate had been finished.
What had started as a "I've always wanted to do this and since I now have the time" project ended up becoming an Orion/Gollancz publisher's bestseller, garnering praise from critics on both sides of the Atlantic. (Unfortunately Orion had not managed to secure American distribution rights at the time of Jay's death and as it stands I'm still not certain if you can purchase any of the series in his home country.)
I've written about Jay before — hence the acknowledgement — but there had to have been a reason for me being so forcibly reminded of Jay again. Perhaps it's the time of the year, when the days are shortening, and what so many call the "Days Of The Dead" approaching; days that we set aside to remember and honour those who dispensed with the encumbrance of their physical form.
That could all just be a bunch of metaphysical horseshit, but I do know that ever since I read the acknowledgement a few days ago, I've wanted to write about Jay again. With all the bullshit you read about people with guns killing other people being heroes, I thought it might be nice for people to be reminded what real heroism is. Although I'm sure Jay probably would have denied being any sort of hero, most people who perform acts of heroism on a daily basis usually aren't aware of it anyway, because to them it's called life.
I live with a body that can't do all I want it do because of a medical condition, and I know the frustrations that I experience. However, that pales in comparison when I try to imagine what Jay had to cope with for the last year or so of his life. ALS destroys your body but leaves your mind intact. Depending on how lucky you are, the deterioration of your body will proceed quickly and include your vital organs so your death isn't lingering and your suffering is minimal.
Unfortunately, for a lot of people that's not the case, and they will experience muscle failure sufficient to incapacitate them to the point where they can not even sit up on their own or talk for an extended period before the release offered by death. Think about what total muscle failure entails on top of that.
It's like being returned to being a newborn with none of the benefits. You can't support your own head to even sit, let alone turn it from side to side. If you're lucky you might be able to move your eyes so you can read a book, but your hands don't work, so how are you going to turn the pages? Holding a conversation is difficult when your jaw can't open and close on it's own because the muscles don't work anymore. You'll be lucky if you don't just sit there with your mouth hanging open.
Communication is reduced to spelling out words on a tablet with a pointer held in the mouth while you can still hold things with your teeth. Then what? Losing all muscle control means losing all muscle control, and that of course includes bowel and bladder, which means you are forced to endure the indignity of wearing a diaper on top of everything else.
Its also more than likely that your lungs won't work on their own, so you will have one tube that will be constantly sucking fluid out of them, and another tube up your nose that will be continually forcing air into them. If your lungs don't work, there's a good chance your swallowing mechanism has failed and your esophagus won't carry food into your stomach anymore. That means another tube up your nose that's carrying some sort of liquid puree to give you enough of whatever to keep you alive.
Maybe I've over exaggerated the symptoms, and by the time everything fails like that, you will be dead; but if that were the case, you wouldn't have people who ask to be put out of their misery through assisted suicide. When they are so incompetent they can't put the pills in their mouth, let alone swallow them, then I would think they are dealing with substantial system failure.
The other thing is that the whole time this is going on, you are also in pain because your nervous system has been damaged. When you have any type of Sclerosis or Dystrophy, what happens is your system is still trying to send the messages to your body to do what it's supposed to do. When it gets no reaction, it thinks something is wrong.
Pain is the brain's means of letting you know there is something not working properly, or that something needs fixing. Therefore, when it realizes nothing is working, it responds in the only way it knows how, by sending out pain signals. If the condition doesn't improve, it keeps trying to send out the message that there is a problem, and it keeps getting louder and louder, increasingly painful.
In spite of this, Jay kept working on the Eldarn sequence almost to the end. According to Robert, even when Jay couldn't write he was contributing by providing feedback on the chapters that Robert would write. That way Robert was able to stay on track with what information needed to be revealed and when. Jay's name is not listed as author as a courtesy; he was one half of a two-person writing team that created one of the better fantasy trilogies I've read in a number of years.
I struggle every day to find the words sufficient to write articles like this. I can't even begin to understand what Jay had to overcome mentally, emotionally, and physically to do what he did every day just by opening his eyes and dealing with his situation. The fact that he was able to help in the creation of anything is amazing, that it was good enough to be published is incredible, and that it is superior to so much of what is on the market today is nothing short of miraculous.
So wherever you are right now Jay, I'm waiting as patiently as I can for part three of the Eldarn Sequence to be released, and thank you for being a really bright spark of light in a world where there are far too many fake stars.