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Day Two: Coping with Lou Gehrig's disease

by Wynn Wagner

This is an email message that Wynn wrote to his step-mother
shortly after she learned that she has Lou Gehrig's disease.

From:	Wynn Wagner
To:	Ann Wagner
Date:	July 2002
Subject:	ALS and the Eternal Now

I am asking two friends of mine -- Father Tony from Frisco; Rev. Dave from Little Elm -- to add you to their prayer lists. My Reiki students and Kemetic group members will be doing the same.

I have no idea what to say about ALS. It is a truly nasty condition, and no amount of sugar-coating can change that.

Without any particular words of wisdom that are beyond my grasp, the only thing I know to do is relate personal experience. You can take or leave any of this as it only relates to me. If you see any tidbits that make sense, goodie... but I can make no promise.

I remember the huge plunge of emotions after I found out that I have HIV. In the long run, it was more of a relief! That may sound weird, but I no longer had to worry myself sick with the fear of getting it. I was freed from the psychological drain of wondering what would kill me. Suddenly I had that answer, and it was freedom in unexpected ways.

Things changed. For instance, I get really annoyed when someone wastes my time as I know I am on a shortened schedule. On the other hand, I don't live like a "sick" person. I am a diseased pariah, but the person who treats me like that has to do so out of my reach!

The diagnosis dragged me back to living in the Now. That is all any of us really has: the Eternal Now.

When you "live in the past" you are merely thinking about it,
and when does that thinking happen?
When you "fear the future" you are merely thinking about it,
and when does that thinking happen?

As much as you try, you can't live in the past or the future. The only think you can do is think about them, and that happens in the Eternal Now.

The Eternal Now is all we really have, and right now... I'm okay.

Let me say that a different way......... I've had some challenges from a colorful history of addiction down to the twin diagnoses of HIV and diabetes.

But there's something completely amazing that I've learned through all of that. When life gets me into a position where I'm standing at the edge of a cliff... and I can't see down, but it obviously is a long fall.

I'm no longer worried about that. Standing at the edge of that cliff scares others, but it has happened to me enough that I know the drill. Without exception I know that when I am at that cliff and going forward is my only option, one of two things will happen... and you can take it to the bank that--

either I will land on some unseen step just inches below the edge; or,
I will be taught how to fly.

Another thing I did was try to make things easier on the next generation of folks with HIV.

It wasn't out of altruism: it was totally selfish.

It ended up with me writing an essay for those just finding out the have the disease. I wrote it because I was annoyed at the lack of information written for a newly-diagnosed person.

It needed to be written. I don't know what you can do about ALS, but I'm sure there is something.

The article I wrote is read by more than 1-million people each month. It has been translated into a dozen languages and is reprinted and used by health departments around the world.

It has been read by more people than any other article dealing with HIV. It is not a distinction that I would have picked, but that was the hand I was dealt. If I'd know, I would have paid closer attention in those writing classes at TCU.

I've seen letters from 3d world doctors saying the article has helped people on the other side of the world, and I've seen letters from patients who say it kept them from committing suicide. But remember: I said it helped me more than it helped them.

I get the most out of it through a spiritual trick that was summed up by an unknown soldier in World War One. He wrote a poem on the back of a picture of Saint Francis of Assisi. If you start feeling overwhelmed or full of self-pity, try doing some of the legwork suggested by this prayer--

Make me an instrument of your peace.
   Where there is hatred, let me sow love;
   Where there is injury, pardon;
   Where there is doubt, faith;
   Where there is despair, hope;
   Where there is darkness, light;
   Where there is sadness, joy.

Grant that I may seek not so much
   To be consoled as to console;
   To be understood as to understand;
   To be loved as to love.

For it is in giving that we receive;
It is in pardoning that we are pardoned;
And it is in dying to ourselves
That we are born to eternal life.

Enough rambling. If there is anything we can do to help you, just say the word. We will see you in a week or so.

--Wynn

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