I just woke up couldn’t sleep. I wanted to get something up today even though I still have all my notes from last nights debacle, it’s still hard to remember everything when you write in this fashion, because a lot of it is impromptu. I know I promised to keep you informed about my disease so here’s a little more about that. Tomorrow I go to a follow up for my last surgery. But tomorrows visit is a little different in that, we now know what my disease is,and so now we have to make a plan to combat the beast. Tomorrow, I am expecting a team of doctors actually, My Surgeon, a Neurologist, and a Psychiatrist, because my doctors assume I’m probably in a depression given the not-so good news from last week. For those of you who don’t know I have a rare disease called Chronic Inflammatory Demyelinating Polyneuropathy or C.I.D.P. It means the “Myelin” sheath protecting my nerves is being eaten by white blood cells from my own immune system. For some reason my immune system thinks my myelin sheath is a foreign object. So tomorrow we start the plan to slow the process so that I may have another 18+ months or so of my present mobility. We can slow it but we can’t stop it. So eventually I will lose my ability to walk completely. This is the reason for the Psychiatrist, to deal with the “shock” of that news. Now, I know that they are great team of Doctors and everything but the idea of talking to some shrink about this makes me a little depressed I think. I mean I think I’m doing just fine talking about it like I’m doing right now. ya know what I mean? I know the’re going to change my diet all around. I know they’re going to take me off of “Gabapentin” better known as “Neurontin” which is designed to stimulate nerve growth and help avoid seizures. I know all these things, it’s the stuff I don’t know that’s making me nervous. Like why suddenly I’m getting these pains that shoot through my leg and causes it to jerk (all on its own) suddenly and violently thereby causing me to fall if I have nothing to hold onto? And will the pain continue, because the 2 surgeries really haven’t alleviated any pain? Stuff like that, so I guess I’m a little keyed up about that. I took a Xanax and still only slept for less than 2 hours, oh well, I spend so much time alone now I have become an expert in “not being bored”.
First, I’ve got three notebooks right to the left of me on my bed, which I use for “Notes on blog ideas” , “Poem Ideas”, and one for movies I want to see/ words to look up…….I find that reading poetry and watching documentaries always leaves me with a few new words to look up each day. So that goes on all day long. Just behind the notebooks I have 2 bookends sitting on my bed with about 20 books between them right now, the books are constantly rotating as I get through one and replace them and so on. There are 3 books that never move though, The Bible, Isaac Asimov’s “CHANGE” because it is amazing to see all the subtle predictions of that book that are just now coming to fruition, and “The Imitation Of Christ” which aside from the Bible is the most important religious/spiritual book ever written for its continued relevance and historical significance, written in the early 1400’s I call it the second Bible, I’m always referring to it for something, oh, and I forgot I’ve got this big ass dictionary where I mark off words as I learn them, I hope to learn them all someday, but frankly, there’s a lot of words in the dictionary that simply have no use these days. Anyway, I guess that’s 4 books. Let see, yes, then there’s my portfolio of pictures, I enter pencil color competetions from time to time, so sometimes when I’m not writing, I work on pictures with my prismacolors (best pencils on the market, they’re awesome) my brother sent them as a gift. Did you know their are now 75 colors in a set. (lol) Any way, I’ve got stuff situated all around me to keep me busy I’m currently working my way through Art Nouveau Animal Designs so it’s fun and you can win money in these contests or get your work in one of the pencil magazines, stuff like that. But I spend so much time writing that the coloring stuff is waaaayyyyy secondary. So, I thought I’d put up a poem today called “His Solitude” that may help you understand what its like to spend so much time alone………..


To live in solitude
A man must retire
As much from himself
As from society
I am not alone
As long as I can read and write
But if a man MUST be alone
Let him look to the stars
The light, that comes from celestial worlds
Will draw a line, between him and ugly things
In this design, you give a man
The universe, the lasting presence
Of the sublime
And when this man
Finds in the stars
A kindred spirit, a friend
He begins to look at life
As though a child again
A sense of wonder, and astonishment
That he knew not of, before
He see’s on the horizon
Through charming landscapes, and early morn
All that he can integrate
Into his new world
And out again
Through mighty words
And steely pen
He does not live in solitude
For he has incorporated
All the parts
That make him whole again
And sets them out into the world
Knowing that his pen
Is mighty
And although he does not know it
His solitude
Has helped him become
A poet

Tony Taylor (Chicago)