Changing Your Expectations While Living with ALS
Last week, I had several email exchanges with ALS patients who wrote about their feelings of anger because ALS had robbed them of the life they had planned to live. I certainly can relate. I felt exactly the same way after my diagnosis. I told them what had helped me: realizing that the life I had planned to live was a fantasy expectation. Only when I began living the real life in front of me did my anger disappear.
We all hold fantasy expectations in our minds. Images of our future selves in superhero form or accomplishing great things.
We think we’ll always have our youthful good looks and energy and feel robbed when gray hair and achy knees appear. We thought that after surviving a year like 2020, life would return to normal. But now that 2021 isn’t turning out much better, there’s a wave of collective anger felt by all.
We feel angry when life doesn’t go the way it “should.” We say, “It’s all so unfair.”
When I stopped working and my husband and I moved to Arizona, I was dizzy with excitement about the many activities I wanted to try. I fantasized about signing up and doing them all. But being diagnosed with ALS forced me to reset my expectations.
Instead of obsessing over what I couldn’t do anymore, I considered what I could do. I thought about the groups and clubs I belong to, what they needed help with, and considering my limitations, how I could be of value.
I challenged myself to live in reality, and “It is what it is” became my personal mantra.
My challenge for you
In turn, I challenge you to try moving through your day by seeing the real life right in front of you as it truly is. Take life day by day, and don’t get caught up in what you can’t control. Instead, accept it and make the best of it. Practice showing up, and find projects that give you purpose.
Spend your day feeling satisfied, and dare I say joyful. Let’s help each other to live well while living with ALS.
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, and are intended to spark discussion about issues pertaining to ALS.