How I help new friends after their diagnosis of ALS
When they ask me questions, I answer with strategies that have worked for me
It takes courage to reach out to a complete stranger and ask for their help. I know, because I’m that stranger, and the ones seeking my help are people newly diagnosed with ALS. But the good thing is, we’re not strangers for long. That’s because I try to make them feel comfortable when they ask questions and discuss our shared condition. But I also know that time is of the essence.
When I think back to my first year of ALS, I realize that I’ll never get back the lost time I spent worrying about it. Even though we each have a different journey with our disease, we share the potential to succumb to negative thinking. So my advice doesn’t include treatments or therapies; I leave that to the medical experts. Instead, I offer emotional support and mental coping strategies. These are the same strategies I’ve relied on for the past 14 years to help me live with my ALS.
Finding a new mindset
Managing my ALS symptoms wasn’t the most important thing on my mind during the initial months after my diagnosis. For months before that, I’d already been compensating for my ALS-related foot drop, weak legs, and loss of balance. Instead, what occupied my time was an avalanche of questions, such as, “Why me?” “Did I cause my ALS?” “How bad will it get?” and “How can I make it go away?”
All of these are common questions that every newly diagnosed patient asks.
I couldn’t bring myself to accept that I had ALS. That’s the hurdle I believe we have to conquer before we can go forward and find a way to live with the disease successfully. And that’s my goal for my newfound ALS friends: to coax them into accepting this big change in their life.
ALS brings change
As I wrote in a column titled “The ALS Game Board of Life,” life changes are often outside of our control and the game board always changes. We have to move on, making the best of our changed circumstances and new perspectives. Although it’s easy to say it, and friends and family often urge us to do it, “moving on” isn’t easy at all. We risk getting stuck in what I call the ALS waiting room.
This room is a mental space I retreated to shortly after my ALS diagnosis in 2010. It’s when I pondered whether I’d give in and assume the role of a helpless victim, or adopt a warrior mindset, where each day is a battle.
I decided to adopt the “life is a journey” perspective. My version of that acknowledges the road isn’t always smooth and detours emerge along the way, but life does flow on, either with us or without us. It takes courage to let go of what you cannot change.
Life plans change
But then there’s this lament: “This isn’t the way my life was supposed to turn out.”
Before ALS, whenever I thought about my future, I assumed my life would continue in a state of health and happiness, filled with interesting activities. Afterward, I mourned the loss of my life goals, my expectations, and the familiar “me.” That’s the shock of change that I hear from others with ALS.
My advice is to spend time focusing on the truth that we’re the same person on the inside, and rather than being overwhelmed with what we can no longer do, we consider what we can accomplish. It takes courage to accept a life with ALS.
Courage, resilience, and learning how to cope with change are what I try to model in my own life and share with others who read my columns. Although we each have a different journey with this disease, I believe we all can learn how 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.
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