Two weeks ago I wrote about end of life choices as they pertain to advance directives. They involve some very difficult decisions, but they are basically for times when there is no possibility of recovery or when one is in a vegetative state. Over the years and even now I have people talking to me about "giving in" to an illness that might have a cure or be put into remission, but the treatment has incredible side affects. These friends and their families wonder if the treatment is worth it, especially when the outcome is very uncertain. Is life worth living under these conditions?
From a faith perspective many of the questions I asked two weeks ago apply. How does our faith and religious beliefs play a part in making these kinds of decisions? Some have insisted on doing everything to save their life. They believe God may perform a miracle and heal them. If you believe in miracles, do you allow all things to be done to save your life? Most religious groups believe in an afterlife. If you believe you will be going to a good or even a better place, would it be better to discontinue treatment and allow yourself to die? If you do not believe in an afterlife, you probably don’t believe in miracles. If this is the case, how does it affect your decision?
No matter what you believe, I can not give you a simple answer. What I can do is share my personal story. At age 24 I had an illness called Guillain Barre Syndrome. It started with me not being able to stand or walk. Within 36 hours I was on a respirator; I could not breath at all on my own. Eventually the paralysis extended to my forehead. My life was dependent on machines and in the hands of my family who had to make decisions. And there was no way to know if I would get better, even with the fact that there was still brain activity. Some have died from the illness. I would not have wanted to live indefinitely the way I was at the peak of my illness. There were even times when I first began to recover that I wished I was dead.
In hindsight I’m glad no one pulled the plug and I was pushed to work to get better. Yes, I still wear braces for foot drop, and my hands still have some paralysis. I will never run or even walk long distances without difficulty. I will never be able to fulfill my dream of playing the guitar. But so many good things have happened since my recovery from Guillain Barre.
I am filled with joy for the many things that have been part of my life. My daughter, Diana, was born a year and four months after I left inpatient rehab, and Kourtney was born six and a half years later. I coached both of their teams for soccer and softball. I helped other parents support their teams for competitive twirling. I continue to be involved and proud as their lives continue to unfold. I received degrees from LCCC, Kutztown University and Gettysburg Lutheran Seminary. I served as a pastor for 10 years. I hope I had an impact on many lives during those years. During that time I volunteered for many community causes including chairing the Client Advisory Board for the Lehigh Valley Office of Vocational Rehabilitation. For these things I received the Congressional Certificate of Special Recognition for my contributions to the community. I could go on about other ways good things have happened in my life since having Guillain Barre, but I’ll stop there.
I can’t tell you what decision to make; each situation is different. And I’m not trying to brag. But as you may be making a life decision in the face of a terrible illness, remember that this decision is about more than yourself and what you may go through in the immediate future. It involves all of the people you are connected to and the lives of people you may touch in the future. I’m not making light of the pain and suffering you are or may go through. Im just saying that even though your life may not be all you want it to be, you may find many good things in your future. You are special, and there is no one like you. May God guide you in your decision and help you realize how wonderful you are.
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