How I Switch to a Long View of My ALS Life
Like most folks who live with ALS, I tend to get stuck in the shortsighted day-to-day management of my symptoms. Over the years, I’ve developed several strategies that help me change my mental focus from a short view to a longer one in which I’m open to the possibilities of enjoying the world around me.
One of these strategies, a SWOT analysis, which I’ll discuss in a bit, comes straight from the business world.
On some days, all it takes to get back on track is following the three steps I outlined in a previous column titled “The Art of ALS Adaptability“: Assess, adapt, and accept. Other times, I sit back and ask myself, “What’s not working anymore?”
Both of these strategies have helped me navigate through various ALS challenges, such as learning to accept wearing ankle-foot orthoses, using a mobility scooter, and living with dysarthria.
But I’m still stuck in a state of short-term thinking, and not taking care of my sense of self and value as a person, nor am I challenging my creative skills. That can only happen when I begin to focus on the long view of my life.
What’s a long view?
Plans and goals that extend from a month to a year qualify as long — in “ALS time,” that is.
In my experience, the best things to do are projects that give us a sense of purpose. I look for projects that take my mind off ALS. These are projects for organizations that challenge my mind and keep me socially engaged, even if the meetings are on Zoom.
For a longer view, I do a SWOT analysis, which stands for “strengths, weaknesses, opportunities, and threats.” This strategy was developed in the 1960s to help businesses evaluate what’s going well and what’s not. I even used it during my professional days. Now, I’ve applied the techniques of analyzing SWOT in my ALS life.
An example
I belong to a local group of fiber artists that holds meetings to teach one another new techniques. I even taught several workshops. But when I began experiencing dysarthria, I knew I could no longer participate in the same way. Rather than quit, I used SWOT to figure out how I could continue to contribute my skills.
Here’s how it mapped out:
Strengths: I knew everyone’s name and the history of the group. I was willing to try new things and put in the research to learn how.
Weakness: My voice prevented me from duties that required speaking. I had to build up confidence.
Opportunity: My group needed someone to take over the duty of writing their online newsletter. Several members encouraged me to do it.
Threat: I would have to learn new technology skills and communicate with everyone via email, not phone.
The result? I took on the duties of newsletter editor for my group and have continued to do so for the past eight years. Yes, there was a learning curve for me, but now I look forward to creating each new issue.
If I had remained stuck in a short view of my life, I never would’ve had this wonderful opportunity to continue participating and to feel valued by my group.
Try a few of my strategies to learn to live well while living with ALS.
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About the Author
Larry and Barbara Berry
I get your meaning. I remained a Trustee of our local public education system even though I was diagnosed with ALS in Nov. 2019 a year into my 4 year term. The support I receive from my family, ALS Canada, columns such as yours Dagmar, and my fellow trustees really helps.
Trevor Bower
Thanks again Dagmar for reminding us to keep it positive. Don’t let the nerds of negativity or the so very negative news that bombards us daily knock us down. There are lots of bright lights, grab that light, that glow, and let it lead you to brighten the day.
Dagmar Munn
Well said Trevor! I'm high-fiving with you across the miles :-)
Jane Erway
I am a mother of a daughter, a nurse, who has ALS. It is very hard to stay positive when day after day you know you will die because of no cure or help. Plus if help does come you know you cannot get it because it will not be affordable so the death sentence is always present. My daughter has now said lets get this over sooner than later when i will just be a vegetable. WE TRY to keep her positive but no one knows only her what she is going through. I applaud you that you can be positive. You seem to have a lot of inner strength. God Bless you.