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.
Fantasy expectations
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.”
Retirement fantasy
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.
Rather than overwhelming myself by trying not to miss out on things, I separated the “nice to do” activities from those that mattered most. It made me confront what I call my “someday-itis.”
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.
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Comments
ELIZABETH
HELLO AND THANK YOU FOR TAKING YOUR PRECIOUS TIME TO ENCOURAGE OTHERS : )
mY SISTE GOT HER GASTRIC TUBE AFTER LOOSING 40 POUNDS AND NOW SHE IS C/O CHEST PAIN AND HARD TO BRETHE SHE HAS THE COUGH ASIT MACHINE WE ARE SO
Dagmar Munn
Thank you for your kind words, Elizabeth. Good wishes to your sister that her gastric tube will help her stabilize her health.
Michael Leist
Your article is spot-on Dagmar!
There's many things I increasingly can't do / control with ALS. I've been on this journey for roughly 6 years, For most of the last 2 years, I haven't been able to move my hands except for a small useless wiggle, can't stand, can't talk, have trach/vent, can't eat, etc. Basically I'm a 0 or 1 on the FRS. But what I do have is my mind, a good attitude most of the time, good technology, and hope. I'm a Christian, but I love this quote from Buddhism that I think reflects an optimal mindset : "The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the moment, wisely and earnestly. " I try to not focus on what I've lost, but do things that I can enjoy that aren't dependent on my physical body. For me, that involves interacting with family and friends, reading and listening to books on Audible, watching sports/movies/TV, playing games (scrabble, euchre, poker, fantasy sports), and helping others online with ALS. I have hope about technologies / treatments In the clinical pipeline, but realistically I realize that I personally may or may not benefit. That's not up to me. But I'll make the choice to make the best of the time I have.
Dagmar Munn
Michael...thank you!
I love your quote: “The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the moment, wisely and earnestly. ” .....it certainly applies to all of us - - whether we have ALS, other conditions, or none at all. If only the whole world followed these wise words, it would be a much more peaceful place to live.
Best wishes to you!
Laura
That’s all very true. All each of us have is today .