In my last column, I shared how I’m always on alert for speed bumps as I travel down life’s highway, while living with ALS. These are the metaphorical unknowns that pop up, and challenge my resilience and positive mindset. But in addition to speed bumps, it’s the mental potholes that I really try to avoid. We all have them. Innocently created from some piece of information we’ve read or heard, that we store that away and end up internalizing it. Internalizing positive information helps “get us on down” the road. Flawed or inaccurate information creates a pothole.
For example, I’ve taught myself to not put much significance in my date of diagnosis.
Now, date of diagnosis is a common medical term used in the ALS community. It’s a valuable date to know when filling out health insurance forms and applying for Social Security disability. It’s also used by researchers to determine a patient’s qualification for enrollment in studies. Most researchers want only ALS patients within two years of their diagnoses.
But for many ALS patients, date of diagnosis carries emotional significance. It’s the day we sat in our doctor’s office hearing the words, “average life expectancy of two to five years,” and probably tuned out everything else that followed. Soon, average internalized into my life expectancy, and we walked out with an invisible expiration date stamped on our foreheads. Pothole alert!
But think about it, wasn’t your appointment just an arbitrary date selected by the office receptionist? Plus, we probably had symptoms of ALS well before this appointment was even made. How many of us spent months, even years in search of a proper diagnosis? What if the receptionist had called and moved the date up, or delayed you coming in? Would that change anything? Somehow, for many, the magic of being told starts the life expectancy clock ticking, creating a mental pothole; a self-fulfilling prophecy of doom.
Here’s how crazy it gets. On Facebook, I’ve come across posts from ALS patients noting and celebrating the anniversary of their date of diagnosis. “Hey, everybody, I’ve made it to my two-year anniversary!” Their friends send along hearty congratulations.
Yes, to celebrate living beyond the doctor’s so-called crystal ball is a rebuff of the medical system and life in general. But why create a ritual around a date that may not happen at all?
And what about those of us with ALS who have lived beyond the five-year mark? Could it be that – thanks to early intervention, symptom-modifying medications and therapies, improvements to durable medical equipment, multi-disciplinary clinics and a wide range of support groups – ALS patients are able to live longer and with better quality of life?
So for me, date of diagnosis is just that, a date on the calendar, one less mental pothole to fall into. I’ll continue to learn, read, listen and stay positive.
When I read, “Life expectancy of two to five years,” the voice in my head adds … or more.
When I hear, “No cure,” the voice in my head adds … yet.
I’m not dying from ALS, I’m living with it!
What are your mental potholes?
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.