Chapters - Living with an Incurable Disease
Today Our Lives Changed
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As my wife and I sat in that hospital parking lot on that cold grey February morning following my initial ALS diagnoses, she stated, "Our lives have just changed." I agreed. Naturally at first I struggled with the physical and psychological realization of my incurable disease. I captured my personal reflections regarding how I was going to face my new life reality. I wrote about my sadness and my fears. I also wrote about my values and priorities. I became aware of how significant we are to each other. I became aware that care providers are usually the forgotten group during such transitions. ...
As my wife and I sat in that hospital parking lot on that cold grey February morning following my initial ALS diagnoses, she stated, "Our lives have just changed." I agreed. Naturally at first I struggled with the physical and psychological realization of my incurable disease. I captured my personal reflections regarding how I was going to face my new life reality. I wrote about my sadness and my fears. I also wrote about my values and priorities. I became aware of how significant we are to each other. I became aware that care providers are usually the forgotten group during such transitions. The world took on a new brilliance. I concluded that my disease offered me a gift. The gift of knowing when and how I was going to die. I found myself retrieving my personal reflections during challenging times. I found them helpful even comforting as I "just kept going". I called them "Chapters" as they represented sequential events and observations. Indeed our lives did change on that cold February morning. Our lives changed for the better. This disease has made me a better person. It has reminded me that life is a gift as well as a journey with those who are important to us. Read on and confirm and/or rediscover the significance and beauty of your personal journey regardless of your challenges - for we all are disabled in some way or another and we will all die. -Matthew Butner
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