The result of my breathing test at my August ALS Clinic visit was poor. It was so poor that the time has come for me to decide if I will extend my life by getting a tracheotomy or refuse the tracheotomy and die within the next year. I knew this day would come, but when it did, I felt like I had been hit in the stomach.
A tracheotomy would be, in my case, a surgical procedure that will create an opening in my windpipe (trachea) in my neck below my Adam's apple (larynx). The surgeon will insert a tube to which a ventilator will be attached. The ventilator will take over from my weak chest muscles the work of bringing air into my lungs. For an ALS patient like me, a tracheotomy and a ventilator offer an extended life that may last for years. They also increase the chances of my reaching a locked-in state in which I cannot move a muscle.
I read an old survey that showed that well over 50% of ALS patients chose to die rather than get a tracheotomy and ventilator. If I make the same decision, I will get a doctor's referral to hospice care. I worked seven years as a hospice chaplain, so I know their compassionate and quality end-of-life care. I also know that dying from ALS can be comfortable and dignified. I would not have to struggle for breath. I would eventually fail asleep and not wake up.
This decision I have faced about dying within a few months or extending my life with less quality forced me to ask important questions. What is my life worth? What is my quality of life and what will it be on a ventilator? How much am I willing to endure to live longer? How will my decision affect my children? What do I really want? If I get the tracheotomy, am I doing it out of fear of death or to extend life? What is best for me?
At least I thought these were the important questions. There is a far more important question I must ask. What does God want me to do? I am a Christian. I am a follower of Jesus. I have given my life to God. I have not understood the full ramifications of that decision until now. My life is not my own to do with simply as I please. My life is to do with as God pleases.
This standard of behavior regarding end-of-life decisions is opposed to the spirit of our age. Secular culture tells us, "You are the master of your fate. You are in control of your life. What matters is that you are comfortable with your decision. It belongs to you alone."
Christians have a different standard for their behavior. It is not a set of rules or a philosophy. Our standard is the life of Jesus, who did all things to please his Father. His end-of-life decision was "not my will, but Thine be done." His decision took him to the cross and a grisly death. His decision was vindicated by the resurrection.
When I look at my decision in this way, it becomes much simpler. God is using me to help people, primarily through my writing, but in other ways, too. God is teaching and shaping me into the likeness of Jesus. As long as God can use me and shape me, I want to live. When the time comes that I can no longer serve God or become more like Jesus, it will be time to surrender my spirit to God.
My decision to extend my life may take me to a locked-in state. I may find myself, like Jesus on the cross, unable to move or breathe. Jesus suffered this death for me. I am willing to suffer this death for him.
(This article was first published in the Asheville , North Carolina
