Not knowing how, I failed to find it when I searched for the dharma in High School. Instead, I began a career in the computer business. When I retired I began trekking for months at a time in the Himalayas and experienced there a gentle, caring culture rooted in Buddhism. So I began searching for a teacher and, after a few false starts, I was blessed to meet Rinpoche in Kathmandu.
My successes and failures in business had all resulted from refusing to accept direction but I knew the moment I met Rinpoche that I would do exactly what he told me to do. That has made the nerodegenerative condition wasting my muscles an adventure. I always liked adventures.
Noble Living With ALS
Amyotrophic lateral sclerosis (ALS) is making my practice easier in some ways and harder in others. It’s a neurodegenerative condition that makes the nerve cells in my brain and spinal cord lose the ability to signal my muscles. That causes them to atrophy.
The first symptoms appeared a little over two years ago when my tongue felt funny. During the nine months it took to eliminate treatable possibilities, my speaking, eating and drinking grew steadily more difficult. Within three months of getting the ALS diagnosis I couldn’t speak at all, and six months after that I needed a feeding tube. For the past eight months I’ve been living on a nutrition dense soy-casein formula.
How has that affected my practice?
First, I feel even more blessed to be alive. Without my human body I couldn’t practice at all. And my mind can no longer pretend that my body will never die. Ordinarily, we rarely feel that every moment is precious because we only know intellectually that we will die.
Losing specific abilities like speech has more specific results, some of which are positive.
It’s good that I can now only ask questions in writing. We distract ourselves from teachings with our questions and we forget that we can answer them by meditating. In fact, we must answer our own questions.
Most of our questions are irrelevant to our ultimate objective. Our end goal is not to master the intricacies of ritual practices or Buddhist metaphysics but to eliminate our conceptual and emotional habits. We’re not trying to become the perfect Buddhist practitioner but to become what we already are but can’t yet see, Buddha. Practice is how we recognize our buddha nature and change so we behave accordingly.
Discursive chatter is a problem but I never did much of that, anyway. I’m sad that I can’t talk with my grand-kids but that’s a different issue and they can feel my love, anyway.
The negative of losing speech is, I can no longer chant aloud. That’s important because chanting aloud is like building a sculpture on an armature, an armature of text not steel. Insights came as I chanted the same words I had thousands of times before and suddenly I would recognize a new aspect of what the words pointed towards. Those insights formed the ever growing beautiful truth of the sculpture.
Chanting silently doesn’t work the same way because I’m more aware of the string of words as words. Chanting aloud is more like acting on a stage, present in the situation, enacting a dramatic role.
So everyone, please cherish chanting aloud while you can still do it!
Practicing tsok with my sangha siblings doesn’t work for me now because I can’t take anything by mouth but Rinpoche told me to do the one page tsok practice with every meal and that’s powerful.
What does the future hold? All my muscles will atrophy because all the brain cells that signal them will stop working. My diaphragm has in the last six months lost a lot of strength. I now tire easily because my lungs are taking in less oxygen. It’s like being in the mountains three miles above sea level except I can’t go to a lower altitude to regain strength. My arms and legs are also losing muscle mass, twitching gently like eddies on the surface of a slow moving stream.
Fortunately, I overcame my hesitation about building a practice room in the old house we moved to while doctors were diagnosing my illness. My practice grew much richer after I had built one at our previous house. Practice in my new room is even better because it’s more cave-like. It will be difficult, though, when I can no longer climb to that room at the top of the house.
I’m not worrying about other other negatives I will encounter. Perhaps there will again also be positives. In any case, my path will continue to be an adventure.