I will never forget my January 2008 Mayo Clinic appointment. Prior to my appointment, someone told me not to worry because although something was wrong, I didn’t have ALS. I foolishly believed that person so I was even less mentally and emotionally prepared to get the terrible news.
After a comprehensive exam and initial testing, my neurologist asked me if I wanted him to tell me what he had found. I quickly responded, “sure please tell me” thinking it would not be too serious. He said he was not positive because there is not a definitive test, but that I had the common symptoms for ALS. He explained how both my upper and lower motor neurons had been damaged and that I had excessive muscle tone along with some muscle weakness, all strong indicators of ALS. I was in shock.
My neurologist said that he would soon schedule more testing in order to rule out any other possible diseases, but that I should be prepared for the worst. I asked him what should I tell my wife Betty. He said to say it was very serious, but that more testing was necessary. “Don’t mention ALS until everything else is ruled out”.
Upon getting this dreadful news, I was barely able to get out of the Mayo Clinic front door before breaking down crying all the way to my parked rental car. I calmed myself enough to get checked in to my motel and later have a quick dinner. I still remember the kind young woman who served my food as I struggled to keep it together.
I realized that I was doomed along with my hopes and dreams. I loved my work as a city planner and environmental design teacher and enjoyed many outdoor activities, but I knew that was all history. What am I going to do? I paced back and forth In my motel room for hours before finally crying myself to sleep.
In the morning, I called Betty saying it was serious, but that my doctor needed to do more testing. I was glad that I caught her busy getting ready to start the day with her public school third grade class.
My boss Lori and I held back tears the next day when I returned to work at the Town of Apple Valley, California. I will always be grateful to Lori for getting me into the Mayo Clinic in order to get to the bottom of what was wrong.
It was good to be busy back at work to help keep my mind off of my ALS diagnosis. I felt surprising good for the rest of that week until reaching the Ontario airport parking lot Friday after work. Betty was expecting to meet me at the Oakland, California baggage claim area for our planned weekend in the San Francisco Bay area. Since I had been doing long distance city planning contract work for a number of years, our weekends together were very important and I also needed to provide Betty more information about my Mayo Clinic diagnosis.
Upon reaching the Ontario airport, my legs suddenly gave out and there was no one in sight in the parking lot to help me get to the airport terminal. I started to panic as I realized there was no way for me to reach Betty to say maybe we should reschedule our planned weekend together. What was I going to do? Somehow, I was able to get to the airport terminal and then to the gate to board my flight. As I hurried to the gate, I told myself to enjoy this walk because it would probably be my last unassisted walk. I felt so sad and broken.
After my plane emptied in Oakland, I told the flight attendant I needed a wheel chair. As the airport attendant wheeled me down to the luggage claim area, I kept wondering what I would say to Betty. I was so heartbroken and devastated that I greeted her in the wheelchair in tears and had little to say. Betty responded to not worry and that it would be okay. The kind airport attendant made sure that we got safely to Betty’s car. I kept thinking how could this be happening to us.
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