It all began with twitching in my muscles. My wife insisted that I go see a doctor, but being a typical male, I ignored her. At the same time, I was having difficulty opening jars and cans when I was backpacking. I had just turned 50 years old, so I thought that this is what happens when you get old. Then one day, as I was writing out my sermon notes, it was as if my brain and my hand were not cooperating. So the next morning I was in church getting ready to preach. During the song right before I was scheduled to preach, I leaned over to a doctor who is a neurologist and told him about the twitching and the weakness. As I look back at that moment it’s really ridiculous – as if a doctor is going to diagnose me during the service right before I preach. He told me that I needed to go see him, like tomorrow.
So I went to see him. He spent about 15 minutes examining me and then asked me to come into his office. He told me there were several possibilities. First, my twitches could be benign fasciculations. He told me that everyone’s muscles twitch and that maybe mine twitch more than the average (I was hoping that I was just a big twitcher rather than a little twitcher). Second, it’s possible that I might have ALS. Once he mentioned ALS, my heart immediately sank. A few weeks later it was confirmed that I had ALS.
There is no way to describe the hopeless feeling of knowing that you only have a few years to live, and most of that time will be in the disabled condition. How does it feel?
It feels like you are sinking into the darkness.
It feels like you have left the warmth and sunshine and descended into a tomb.
It feels like you are in slow motion while the rest of the world speeds past.
It feels like you have a ringside seat to your own demise.
It feels overwhelming!
I have been a pastor all my life and have helped many people deal with difficult circumstances. But there is a huge difference between helping someone and dealing with it yourself. I thought that if I knew I was dying, I would really read the Bible. I found the opposite to be true. I can hardly pick up the Bible and read it at all. I thought that if I knew I was dying, I would really pray. I found the opposite to be true. I can hardly pray at all. I thought that if I knew I was dying, I would begin to think a lot about heaven. I found the opposite to be true. I found myself more and more attached to the people around me. In the midst of my struggles, I began writing a book entitled “Prayers and Promises When Facing a Life-Threatening Illness.” During my youngest son’s second tour of Iraq, compliments of the Army, I sent him a copy of the book. The book contains a morning prayer and an evening promise. Throughout the book I tell stories of my own journey. My son told me that the stories would make wonderful short films.
Now I have really never been into films. I seldom watch a film and I sure never anticipated being in a film. When my son returned, we began working on the idea of a series of short, 10-minute films. That idea is now a reality, seven short films in a series called Ed’s Story. During the first year we worked on the films, we tried to identify the ideas that would give a sense of hope to people who have had the air knocked out of them. Early in my journey with this disease, I discovered that I did not want to read a lengthy book on suffering. I could only take information in short, concise and focused segments. These short films are designed to do just that. It only takes 10 minutes to watch one.
It is difficult for me to watch the films. When I watch a film I relive the situation over and over and over again. I’ve discovered that my emotions are just beneath the surface. When I watch the films, those emotions come rushing to the surface. So why did I do the films if it is difficult to watch them? I wanted to do something to give a sense of hope to people no matter what their circumstances. We are all human beings and part of our challenge is to face struggles and respond to them in a healthy way. I’m not sure I have always responded to my struggles in a healthy way, but at least I’m trying.
This post first appeared on The Huffington Post on 10/5/2011