Entry 16: January 2023

January 19, 2022

by Brian Jeansonne

today I began writing again for the first time since I got home from the hospital. I was able to write other over 1000 words. This week a friend reached out to me and ask how I would advise her other friend who also has ALS. the only thing I could think of was, feel the feels. As i pondered for some time after that text thread, I realized we don't all approach ALS the same. which led me down this rabbit hole as to why I approach life the way I do.

here is an excerpt from my chapter entitled: On Training

Training. It is hard work. It is time consuming. It’s not always fun. It’s going to cost you. Time. Energy. Effort. Sweat. Tears. Training for a marathon meant waking up at 4 am to run in rain, sleet, freezing temperatures and glorious days. It meant sore muscles and ice baths. However, if you put in the work then you will reap the reward. For me the rewards were crossing the finish line and more importantly, learning how to work through pain and heartache and disappointment and keep going.

When I was 36, I embarked on a journey that would change my life. I began learning and practicing the arts of meditation, mindfulness, centering, sitting in silence, solitude, and rest. I went back to school for two years to educate myself in these practices and I trained. For years. And it was difficult and scary and time consuming and fun and boring and exciting. If you really want to know who you are, spend some time by yourself in the quiet for hours and hours.

We live in a society that values being busy. Ask someone what they have been up to which they will reply, “oh, you know, just been busy.” As if it’s a badge of honor. I suppose if they were to answer, “not much. I work as little as possible and spend the rest of my time with my friends, family and neighbors,” we might think they are lazy or unmotivated or something worse. But what if that person is the one who is enlightened and has figured out the real secret to true life? That is one of the greatest gifts of ALS. I’m not busy.

“Brian what have you been up to?”

“Oh, you know. Mostly just sitting on my ass, just doing things I want to do.”

And nobody gives me shit about it.

Training and learning about and listening to your inner life, your soul, is the most important work you can do. This is the kind of work that will change you forever and pay off huge dividends when you least expect it.


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