This is one of several essays from my private cancer journal. It is not intended as anything than a record of my states of mind as I struggled with the disease and the effects of the treatment.
March 5, 2000
What was I thinking of before I was diagnosed?
What did I think my life was?
I look at where I am now, struggling with myself and my situation and I look back a few months before I was told I had prostate cancer and I am looking at another person, another life, someone who not only had no cognizance of himself or the world around him, but THOUGHT he did. Amazing.
It is called "taking things for granted." In this case, it is me and my entire life. And by "my entire life," I mean my days, my nights, the people around me, my wife, my son, my furry friends, the weather, the trees, the sun, the grass and even the very keyboard on which I type this. They were just there.
Why is it that those of us with terminal illnesses are blessed or cursed with this ability to see things anew? Perhaps those who have had Death brush against them know this. I don't know. I wasn't capable to understanding this until now. In fact, I'm not even sure I do.
For the last couple of weeks I've been working to name this Web site that I want to create. I don't want to use the word "cancer" and it has to say what I'm trying to do. I prowled Web sites, dictionaries, thesauruses and tracked one word after another, hooking them up and throwing them away. I came up with "The Socratic Project" (for men in dialogue) and that lasted a day. Okay, how about a warrior image? Back to the dictionaries and landing on Beowulf, the classic warrior. Beowulf what? Needs something. Beowulf365. Except Beowulf is killed. Can't do it.
I finally came back to the first word I had thought of weeks ago: Phoenix, for the mythical bird. Phoenix what? Phoenix Project? No. Finally, "Phoenix180," to "help men rise above and turn around the most personal battle they will wage." Okay, I'm in the ballpark.
Then I spent a week struggling with HTML [the computer language to create a web page], trying to create a design and a motif that will fit what the site is meant to do. I finally got a sample home page and then the next, a menu page. They are enough to move on and that required that I start to assemble the information that will go into the site. I already have some filed but I went back to web sites dealing with prostate cancer and that is when I broke down.
It was the "Affirming the Darkness" web site with excerpts from a book by Chuck and Martha Wheeler that tore me up. Chuck fought the disease and finally passed on. I was reading summaries of his journal and came across the phrase, "Teach your wife to be a widow." I couldn't take it any more. I broke down crying and had to stop for a long break.
After awhile, I composed myself enough to continue. And then I found Tom Feeney's site. I noticed it had not been updated in over a year. It didn't say why. I later found on another site why: he's dead.
I had to stop again and go onto the front porch and that was when I began to wonder, what was I thinking I was doing before this all of this? I read some of these men's stories and there are so many who have gained this insight. One, I forget for the moment which one, considered it a blessing, to realize and see so much.
But is it a blessing? I've said so in other essays but then there are times like today when I don't want it. I don't want to know or understand this much. I don't want to grasp what Chuck meant when he said, "Teach your wife to be a widow." I don't have a wife but I don't want to teach that to anyone.
And I envisioned the day when someone comes to my site and writes me and gets no answer and learns that I am dead.
This is a "blessing"?
I understand why some want the numbness instead. This reflective state can thrust a person to a level that sometimes we simply cannot handle. Nor can we put it into words for our vocabulary is built for that other life, the ordinary life where there is no prospect of death, the one that I had a few months ago when I took it all for granted. The closest comparison I can make is when I was in some drug-induced state, like with marijuana or LSD that I experimented with back in the 60s. They thrust me into a level of awareness that was so alien to everyday life that it could be shared only with other "heads."
I find myself in a similar situation. I can share my new life with a few others in this state, but to share it with those who have not crossed that line is to produce havoc.
Much of my problem is that I am such a novice in this world. Others have lived in this state for years. I don't know what that is like to live in this world for that long. Each one treats it differently. Mine is to make this Web site. It is what is holding me together now. It is what I have to do not only to give some meaning to my life but to give myself the chance to understand what is happening.
Someone might think that I am an "expert" on the subject of the issues facing men with PCa because I am creating this site. Or that I have dealt with them in my own life. They would be wrong on both points. I am the first person to need this site. I want to hear how men have dealt with these issues in their lives. Nor do I believe any have resolved them fully. But I want to hear from those who have gone before me. I need to learn what they have seen and learned and what they are learning still.
More than mere mystical insights, I want to learn how they are living their lives as people and as men.
I just realized how different that is from the life I led before diagnosis. I wasn't that interested in the lives of people. I was more interested in my own. I haven't changed that much. It doesn't happen that fast. But maybe I can.
[Affirming The Darkness is at http://www.affirming.com>.]