3 Mistakes I Made During My First Year With ALS
Living with ALS has its challenges. For me, the first year after my ALS diagnosis was the hardest. Looking back, I made some mistakes and wasted time and energy that I wish I could have back again.
Although we each experience a different journey with ALS, I believe we all can relate to first-year mistakes. Following are three of mine and how I conquered them.
Mistake No. 1: I caused my ALS
Once I learned I had ALS, I spent many sleepless nights retracing my life trying to figure out exactly what I had done to cause it. Did I exercise too much or too little? Was it something in the air or the water? Did I zig when I should have zagged?
During the day, I’d scrutinize everything. Should I be eating this? Is it my soap? My shoes? Should I use only natural products? Deep down, I knew that self-blame was unproductive. Eventually, I decided that finding the cause of ALS was best left to the medical experts.
I’m sure glad I gave up on my need to know the why, because even now, 11 years later, the experts still can’t agree on the cause. Although the time I spent worrying is lost time I’ll never get back, I’m content that I found a way to accept my illness and live with a new perspective.
Mistake No. 2: I had a set expiration date
Hearing “terminal illness,” “no cure,” and “only two to five years to live,” has been described by many ALS patients as having the rug pulled out from beneath them. But it’s what we do with that knowledge next that matters most. Our mindset dictates how our lives unfold.
For example, my physical therapist recently shared with me his observations about how he’s seen patients react. “Two to five years? For some, them’s fightin’ words! But others simply shrug their shoulders, say OK, and then just waste away.”
I had my own limiting mindset. New clothes? Why bother? If I’m only going to be here for only a few years I’ll just wear out the ones I have. I was stuck in the ALS waiting room.
It was only when I reframed my diagnosis into a new, more positive, wellness-oriented approach that I felt able to contemplate having a future. Then I was able to reengage in life.
Mistake No. 3: Don’t tell anyone
Not only was I unsure about how to explain ALS to my friends, I was also embarrassed to tell them I had it. This goes back to my first point, of feeling guilt, and of thinking I somehow had a hand in causing my illness.
I also worried that my having ALS would change the relationships I had with my friends, or that I would lose these friendship altogether. I’ll admit, telling friends was hard for me. In fact, it wasn’t until the Ice Bucket Challenge in 2014, four years after my diagnosis, that I fully came out to extended friends and acquaintances.
My friends erased all my fears and apprehensions, making me wonder why I even worried in the first place. They became my best supporters and enjoyed helping me and cheering me on. I only had to let them know how they could help and what I needed.
Learning to live with ALS takes time. There’s a learning curve and we all go through the early phases of denial, guilt, limiting mindsets, and wanting it to just go away. The first step is to accept our illness. Then engage in life, reach out to our community of support, and know we are still the same person on the inside. Together, we can help each other learn to live well while living with ALS.
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