Other chapters:


Chapter 42

What This Is

March 5, 2001

The thing that has frustrated me the most lately is my inability to talk to you. In my head, I'm constantly telling you everything that's happening. But I have no way to get the words to a computer so that you can read them. Today, Paul has been kind enough to write this all down for me.

Here's my current situation. My right hand and arm are almost completely immobile; I can't lift my elbow from the bed. My left hand has grown so stiff that I can no longer pick up a can of soda. I've lost all ability to move my legs more than a fraction of an inch. This all happened very quickly. In the course of 5 days, I lost all my remaining ability to do anything for myself. Needless to say, this was depressing as hell, and about as welcome as a horde of rabid boxers stuffed under my blankets.

The most frightening changes are the slurring of my speech and difficulty with swallowing. These signal the beginnings of the end for an ALS patient. I'm also coughing up phlegm a lot, which is disgusting to do as well as to read about.

The people at the ALS clinic refused to give me an estimate of how long they think I have. My Lyme doctor has pretty much thrown in the towel. Nothing we've tried has worked. At this point, the only people who think that the Grim Reaper is not actually in the room are Lynne, Michael, Paul, Deb and Gary, the Cherokee shaman. It should go without saying (but I'm going to say it anyway) that I believe them more than I believe the doctors.

As I've written before, I find hope essential to the process of living. The balance between hope and acceptance is something I've worked out to my satisfaction (see Chapter 40). I accept what today is. And I continue to hope that tomorrow will be better. This seems to me the only sane approach to my situation.

A quote, which has meant a lot to me, is this one from Normal Cousins:

"Optimism doesn't wait on facts. It deals with prospects. Pessimism is a waste of time."

People who believe in miracles may not get them, but my experience is, people who don't believe in them never do. I still believe in miracles. However, an obsessive part of my mind forces me to deal with the reality of my situation. It's likely that I'll die soon. So I have found myself preparing for that eventuality.

I've been consoling myself with the concept that, since death is inevitable, it's something that has to be dealt with even if it's not just around the corner. Unfortunately, my body thinks that it is. According to my body, the Grim Reaper is standing at the foot of my bed, sharpening his scythe. I don't see him. But my body seems convinced of his presence nonetheless. The point is that it's likely that I'm going to die in the near future and that I won't be around in 2002. So I've been preparing for that.

If you've read God Stuff, you're aware that I know that death is not the end. (I specifically did not use the word "believe". I meant, "I know".) So death itself doesn't frighten me. In fact, there are many aspects of it that cause me to look forward to it with pleasure. There are so many people I want to see again. The problem is not with death. It's with the process of dying.

I can't bear to think about the separation of myself from my family and friends. I know full well how painful death is for those who are left behind. I've been down that path more times than I care to count. I'm also afraid of the physical process of dying. The majority of ALS patients choke to death. Obviously, if I had my druthers, this would not be a method I would choose. Personally, I would prefer popping an aneurysm at the moment of orgasm with a beautiful young hooker (the reason I chose a hooker and not my wife is that I think it's a particularly unpleasant death for the surviving partner, and it's not something I would wish on Lynne. It's the ultimate form of "fuck 'em and leave")

Anyhow, leaving my fears aside for a moment, I am in the process of preparing for death. Prosaic components of this involve filling out living wills, and all the attendant paperwork that involves. The less prosaic part is entirely internal. It's seeing my place in the natural order: Everything is born; everything dies. This is as true for a blade of grass as it is for stars. And it's particularly true for us mammals.

When I see my own death as part of the natural rhythm of life itself, all the terror disappears. We tend to vilify death in our culture. But Mark Twain knew better. He said "the inevitability of a man's death is the greatest kindness shown to him by an often callous universe." While I disagree with Twain about the nature of the universe - I find the universe has a wider streak of kindness than Twain was aware of - I certainly agree with him about the nature of death. It means that, no matter how horrible life may become, it can't go on forever.

Nothing lasts forever. It took the sick, twisted and infinitely perverse minds of the early Church fathers to conceptualize a hell that went on forever. Twain reviled them (and also Jesus, which was a mistake: Jesus had no part of creating hell as it was passed down to us). Twain saw those early Church fathers were villains who had committed the greatest crime imaginable against human minds. I prefer to view them as a bunch of sick, power-hungry fucks who didn't know anything about anything, Given pictures of their asses and of holes in the ground, they would have been completely stymied, trying to explain the difference. The only purpose the invention of hell served was to keep people in line through fear. Anybody who does this, be they politicians, church leaders, or Nazi SS commanders, are the only ones who deserve the hell they created.

Nothing goes on forever. Not in this universe, designed by our creator. At least, as far as I can tell

Don Juan told Carlos Castaneda, "your death is always with you, just over your left shoulder." I find that a useful image. I wish I had known and befriended my death much earlier in life. He is a boon companion, and not at all the dread figure I wrote about in an earlier chapter. If he shows up again, I'll try and write a more accurate picture.

Anyway, the point I've been rambling towards is this, Preparing for your death is supposed to be a lifelong process. And for me, preparing for death doesn't mean giving up on life at all. Not in any way.

In spite of the messages my body is sending almost every minute at this point, deep down I still agree with Michael, Lynne, Paul, Deb, and Gary. I'm not going to die any time in the near future. As a matter of fact, in my last communication with Gary, he told me that I was to use this time when my legs and arms failed to function to become acquainted with those realms where legs and arms are not necessary. He made it clear he was talking about the spirit world, where he travels as often and as naturally as most of us go to the 7-11. So far, I've had limited success. Except, possibly, in dimly remembered dreams, which dissipate as I wake up.

I hope to refine my technique when Deb comes, next Monday. Deb is the acupressurist who has been working on me for months and who first introduced me to Gary. Gary has asked her to teach me the Light Body technique, which he uses as a first step in freeing himself from the meat packages we all walk around in.

I'm looking forward to it.

She would have begun last week, except that my body in its infinite wisdom chose to embroil me in spasms of agony, which ended in a night of vomiting. This was something I'd been terrified of, vomiting when I can't move my head. While it turned out to be exceedingly nasty, it was nothing like the life-threatening ordeal I had imagined. When I told Gary about this, he laughed and said that everything I'm afraid of is going to be thrown in my face, and I'd better get used to it. He also said that the vomiting was probably my physical body purging itself of the psychic crap he had cleaned from my spiritual body. He viewed the entire experience as a positive one. He then reminded me that he had warned me at the beginning that he was one of the few people to whom I would tell tales of horrendous experiences and he would reply, "That's great!"

In working to purge my mind of useless and debilitating habits, one of the first things to go was my collection of metaphors.

I had to give up metaphors. That's very hard for some people to do. I used to love them. But I've come to realize that we make them up to shield ourselves from cold reality. A metaphor's function is to convey the unexplainable. To say "I feel like I'm walking on air" is to try and communicate the feeling of exultation and joy. The problem comes when we use metaphors to explain things to ourselves, not communicate them to others.

Metaphors come between reality and us. Thus, they obscure our view and clutter our thinking. They in fact cushion us from having to deal with what is.

The biggest thing I've come to understand is that we spend the majority of our lives actively avoiding living in what really is. We have hundreds of mechanisms to do this. Using metaphors is only one.

Another example is the word," should". We tell ourselves what should be, so we can avoid confronting what is. I think I wrote about this earlier, so I won't go off about it now. Still another avoidance technique is spending hours combing our past and looking for elements we might have changed to make the present more palatable. The past is etched in fucking stone. You can no more change what you did yesterday than you can bring the mummy of Raamses back to life. Any time spent wishing you could change the past is time you've successfully avoided living in the now, and has the same value as trying to piss up a chimney

(OK. "Piss up a chimney" is a metaphor, but I used it consciously to convey something to you, not to me. I already know what I mean. Also, I choose to keep this entertaining, because it makes me happy.)

Facing things head-on is the only method for real accomplishment.

As kids we were taught to avoid as much pain as possible - another bad lesson that has to be unlearned. Pain isn't always bad. Fear isn't always bad. You can't get anything done if you avoid them all the time.

The way to deal with pain is the same as fear. You let the sensation wash over you, and work from within it. I wish I'd learned this years ago. I could have made my life so much easier.

But then again, I've just made my own mistake. I'm wishing I could change the past. It's a hard habit to break.

The point is I've arrived at this realization now, and I'm very grateful. Which leads me to what I wanted to say from the beginning. For everything I've lost - and I have lost a shitload - I've gained something in return. And while I wish the universe could have found a gentler method to teach me, I remain profoundly grateful for the lessons nonetheless. Even while vomiting, I was learning. For me, life doesn't get better than that.

* * *

I now have several people who have agreed to serve as my 'amanuenses' (people who not only write down what I say, but improve it). So I hope to be back in contact with you all on a more regular basis. My primary concern at this point is completing God Stuff, so expect new chapters there as soon as physically possible.

With love,


.. Write to us: luther@lutheroutloud.com