‘My Journey with ALS’: A Person’s Testimony
By Christine Jasch
Disability has always been present in my life. My father had ALS (amyotrophic lateral sclerosis). When I was 10 years old, my aunt, my father’s sister, was diagnosed with ALS. It was then that we discovered that ALS ran in our family. My cousin – my aunt’s son – passed away in 2003. I’ve lived with the knowledge that someday my brother, my sister or I might be faced with the same fate. I chose a career where I worked with disability every day, and I married a man with a disability. Disability, for me, has been the norm. My husband Ken and I lived a normal life (college, jobs, parenthood, home ownership) until he passed away unexpectedly in 2009.Small Signs
In November 2008, I started having muscle twitches in my left knee. I was terrified, but after checking with my doctors and hoping it was a side effect of medication, I resolved to put it out of my head. In July 2009, weakness in my left foot started and panic set in.
In August 2009, we went on our annual camping trip with families from the church. At the beach is a large dune I have climbed multiple times. It’s a glorious feeling to finally reach the summit only to turn around and run down to the bottom. While I wisely did not attempt the larger, steeper dune at the campground, I felt I could certainly handle this one. I started slowly, trying to pace myself, confident I could reach the top. A quarter of the way up I was forced to acknowledge my fatigue, but I continued to climb. At the halfway point I could climb no more. I sat on that dune and wept. I yelled at God. I swore at Him, I screamed, pleaded and begged Him. That was the first time that ALS stole from me and prevented me from doing what I wanted.Then, in September, a neurologist told me it was not ALS. This, however, offered no comfort, and I feared the worse. I was terrified of what the future held and worried about the impact this would have on my daughter, my husband and my job.
After Ken passed away in November 2009, the progression of my weakness sped up. By February 2010, I needed a cane, by April I needed a foot orthosis, by June a walker, by August a scooter for distances. July 2010 brought the official diagnosis, something I already knew.
Life’s challenges
Each stage brought a new challenge. Moving from the cane to the walker; the walker to the chair. I gradually lost the ability to perform my own self-care: getting dressed, driving my car, writing my name, feeding myself as well as all the other daily tasks we take for granted. Playing in the church’s Bell choir was a source of joy and fellowship. This too was stolen from me.I referred to these times as transitions. Each one brought denial, anxiety, anger, sadness and a great fear of the future. The denial was the most dangerous; as it led me to continue doing things that I shouldn’t have, often resulting in a fall. Once I began looking at a transition as the loss that it truly was, I was able to acknowledge and grieve the loss and move to the next phase with easier acceptance and less denial.
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