March has been good to me. Kristy and I celebrated 20 years of marriage, and I would say that alone is a highlight, enough to carry me through. I have no idea how many more anniversaries we get, so every single one is a precious gift.
I also entered a story slam at The Moth in New Orleans. The topic was stakes, and I told the story of when I was faced with the life-or-death decision of getting trached. Storytelling and public speaking are two of my favorite things to do, and I am so grateful that has not been taken from me by ALS. It gives me a sense of normalcy and allows me an outlet that I love.
In addition, March brought with it lots of time outside. Finally, trips back to the coffee house, as well as City Park and lots of baseball and softball games. And let us not forget that Season 3 of Ted Lasso came out. So, March. Yeah. Much, much better than February.
Physically, I am the same. I suppose these updates from here on will be more about what I am learning and less about my health, as I’m not sure what ALS has left to steal from me. But when it finds something else to rob me of, I’ll let you know.
I was hanging with a friend recently, and as he was watching me type, he said, “I don’t know if I would have the patience for that.” I thought for a minute and replied, “you wouldn’t. Unless you’re practicing now.”
We seem to often have this idea that things will just come to us when we need them, but that is not how life works. There is great truth in the ancient wisdom, you reap what you sow.
My oldest son, Micah, has been drawing since he was 7 years old. Now, at the age of 18, he is about to publish his first comic book. My third boy, Nate, has been playing baseball since he was 7 years old. This year, as a sophomore, he earned a starting position on his varsity baseball team. Neither of these were accidents, nor were they just dumb luck. These outcomes are the results of many years of hard work.
When I was 35 years old, I began to take my inner life seriously. I began intentionally practicing taking care of my soul. I implemented many new practices into my life. Silence. Meditation. Solitude. Time off. Surrender. I began engaging in healthy conflict and practicing contentment, patience, and self-control, and sitting with myself and learning who I was as well as familiarizing myself with my shadow self. These things I practiced for 8 years before I was diagnosed. So, upon diagnosis, I was ready for this shit. I had been training.
Nowadays, I am always encouraging people to take care of their souls now. Don’t wait. For you never know what tomorrow holds. Of course, you’re busy. Who isn’t? Besides me. But what good is it to work your ass off and be busy, busy, busy, and yet neglect your soul, your essence? There is no greater lesson in futility.
So, people praise me for how well I’m navigating this and say, "I don’t think I could handle this like you." You’re probably right; however, if you start practicing now, then when the shit hits the fan… You’ll be okay. It doesn’t mean it will be easy. As a matter of fact, it will still be hard AF, but at least you’ll have the tools to navigate the clusterfuck.
It is my experience after working with people for my entire adult life that people will take care of their outer life. They will work out and put good food in their bodies, and they will look great. However, the majority of people don’t even think about taking care of their inner life. I would suggest that this is because taking care of one’s inner life is hard work. Actually, it is more difficult than getting up at 5 am to go for a 6-mile run. But it is so worth it.
Life is beautiful. And life is a Clusterfuck. The beautiful part is easy. The clusterfuck is coming for all of us. So, do the work now.
Life is a beautiful clusterfuck, and love is here.
Love to you.
Thank you for being here for it.
Love.