11.29.11 | Faithfully Facing Mortality

I was diagnosed with ALS in November, shortly before Thanksgiving. About a week later I was sitting on the porch of my house watching the first snowfall of the season. As I sat there I was beginning to sink into that darkness. I was thinking that this would be my last winter. I was thinking that this would be my last Christmas. I was hoping to make it to spring! As I sat there depressed, I noticed a bird on the bush outside the window. As I sat there watching, it flew away, and I thought, “I wish I could be that bird.” And I thought that the birds have no cares, no issues, and no ALS. Then immediately I was drawn to the words of the writer of the Hebrew Scriptures:

My heart is in anguish within me:
the terrors of death assail me.
Fear and trembling have beset me
Horror has overwhelmed me.
I said, “oh, that I had the wings of a dove!
I would fly away and be at rest—
I would flee far away
And stay in the desert.”

–Psalms 55:4-7

This is exactly how I feel. I love the language—anguish, terrors, fear, trembling and horror. I’m not afraid of being dead. It’s getting dead that bothers me. For me, “getting dead” involves choices about wheelchairs, communication assistance, feeding tubes and breathing assistance. It’s not pleasant when I think of the future. Of course, I try to ignore it but the underlying reality is always there. I think it bothered the writer of this prayer as well. In the face of death and dying, I would like to be a bird. I would like to get away from this situation. I would like to feel like I am free. This passage expresses my deepest feelings.

I am a follower of Jesus. And I am fully aware of what Jesus says about worry. (“Therefore do not worry about tomorrow, for tomorrow will worry about itself,” Matthew 5:34). Do you know how many people have come up to me and quoted this verse? Their attitude is that since Jesus said this, I should obey it. However, they have little to worry about. I am facing death and a life hereafter and I have a whole lot to worry about. This quotation comes from an extended passage in which Jesus deals with the subject of worry. In the middle of this section on worry, Jesus refers to the birds. “Look at the birds of the air, they do not sow or reap or store in barns yet your heavenly father feeds them.” So every time I see a bird, I am reminded that God takes care of them and if he takes care of them, he will take care of me. As I sit here writing, I am looking out the window and I see a bird. God takes care of that bird and ultimately the same God will take care of me. Of course, I’m not sure how God takes care of a bird. Neither am I sure of how God will take care of me. But since he takes care of the birds, I know he’ll take care of me.

So every time I see a bird I have two options. First, I can want to be like the bird and fly away to be at rest. It’s the longing to be set free from ALS. It’s the longing to be set free from the terrors of death. Second, I can realize that God takes care of the birds and ultimately he will take care of me. Sometimes I go for option one. I long to live and be free. Other times I go for option two. I know God takes care of the birds and I know he will take care of me. My life is lived between these two options. On the one hand is the fear of death. And on the other hand the reality that God will see me through.

Everybody has something to worry about. It may not be ALS. So whatever you worry about, whenever you see a bird, remember that God will take care of you.



This post first appeared on The Huffington Post on 11/14/2011.

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11.2.11 | Ed Video Blog #1

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10.24.11 | Sinking Into Darkness

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

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