I recently attended a Zoom event called "Ask Me Anything ALS - Finding Meaning as a Person Living with ALS." It was put on by I AM ALS, an organization founded in 2017 by a newly diagnosed 37-year-old and his wife. There was a panel of four pALS and about fifty attendees.
I avoided these types of events for years for one simple reason. Fear. I didn't want to see my future in an unmoving man in a chair. I was walking and talking and young; I couldn't see myself in people like that.
It's not that I've stopped being afraid―I don't think that'd be possible for any of us. But I'm more able to face it, every now and then in small doses.
Two of the panelists, both women in their 50s-60s, used speech-generating devices and were mostly motionless on screen. One, I learned, was 14 years in and has been breathing through a hole (a tracheostomy) in her neck since 2012. She chose her words with the assistance of an Eye Gaze device. And she still works, full-time, 40 hours a week!
I was a bit thrown by the robotic voices at first, almost unable to listen to the words for the novelty of their sound. But my ears soon adjusted and I heard them as anyone else. Their wise words and attitudes were inspiring to say the least.
I'm not going to try to recreate the lessons spoken by any of the four pALS, because I couldn't do them justice, but I often found myself nodding along. I've felt for a long time that along with the physical deterioration ALS has created, it has also provided the circumstances that lead to an increase in clarity. I'm sure it doesn't always work that way, but to use a cliché, the panelists' perspective often matched the one I have chosen. Though I may never have come up with their words, I usually found myself wholeheartedly agreeing with their thoughts.
On second thought, let me try to list a few of the themes.
· You can't control over people's reactions, levels of acceptance, anger, or emotions.
· Live in the present. Don't ignore them entirely, but don’t spend too much time in the past or the future.
· Practice gratitude. Be appreciative of what you have.
· We are human beings, not human doings. We have value beyond our physical capabilities.
· It can be helpful to be of service to others in order to live outside of yourself.
· In relationships, don’t focus only on ALS, converse about your lives as you would have before ALS.
I think that fear of the unknown can cause us to avoid potentially valuable experiences. We’re just so afraid of discomfort, even as adults, even if we know it will pass. I was moved to the verge of tears (I cry easily; thanks ALS) several times on that call―on Zoom nonetheless―in a way that I rarely experience. Authenticity, openness, and vulnerability can be so very moving. Don’t live in fear; seek out something real.