ALS: A new paradigm
Updated: Aug 21, 2020
For the past year I have immersed myself in some deep and interesting questions about healing and wellness. These aren’t new questions for me – they’ve been part of my journey since the 70s, but working with Dr. Scott Stieber and his journey through ALS has been a mind meld of East and West.
Scott and I talk weekly over the Zoom video conferencing platform about a wide variety of topics. Some of our conversations are interviews for an upcoming book including Scott’s background and history. Much of the time we are hashing out the whys and hows of his disease to tell the story of an allopathic doctor who has chosen to work with his ALS from an Eastern perspective. What changes is he feeling? How do Mindfulness, Breath, and Yoga Posture affect his quality of life? Our conversations together are real, frank, and based in his exploration of the life force the yogis call Prana.
For my part, I’ve spent my adult life practicing and studying Yoga and Meditation and am now putting words to Scott’s journey and my own. With Scott’s help and guidance, we are creating a language around the experience of Prana. As a Professional Yoga Therapist for the past 13 years, I’m accustomed to blank stares when I tell people what I do for a living, but fortunately that dynamic is changing as these practices gain a foothold in the Western world. Bringing these practices to a diagnosis like ALS, with a Western trained doctor as the client, adds credibility to a journey that can be difficult to comprehend. Scott’s “all in” attitude is the key ingredient, and the telling of his story opens the door to research into the Mind/Body connection and its potential to support health and wellness.
So what is Prana? Prana is the energy matrix that supports the physical body. Here in the West we don’t like to talk about “Energy.” If we can’t dissect it, measure it, or put it under a microscope, many believe it isn’t real. But… it is. Prana has been defined as the Universal Life force which is linked to the breath, but also much more. It is also Awareness, which directly links Prana to the mind.
Currently, ALS has no cure. And Prana in the form of Yoga and Meditation doesn’t cure ALS either. But Prana does offer a structure for working with the physical deterioration of the motor neurons in a different way – through the back door of Prana. From the source. And it doesn’t stop there.
With Prana, Scott is happier. He feels more spiritually awake than he has ever felt before, and his family sees it. I recently interviewed Scott’s daughter, Molly Stieber. Molly was married about a month ago. She’s the baby of the family and when her dad was diagnosed with ALS in 2011, she grieved the stark reality that her dad probably wouldn’t be present at her wedding. “Everything kicked into high gear,” said Molly. “We didn’t want to waste a moment of his time here. Everything felt immediate. My sister Chelsea got married right away. We were even planning what photos to use at his funeral. There was no hope – just loss.”
Scott’s family mourned the loss of the father they had known. Before ALS, Scott was driven and always active, giving it all at work and at play. He had a million projects going all the time. Running here. Running there. When he was diagnosed with ALS, much of his energy and drive started to slip away. He felt hopeless and disconnected from the life he had created.
After falling numerous times and breaking a hip, Scott finally accepted the need for a wheel chair. It gave him mobility again, but also set him up to do less. Before long, Scott had given in to the Western view of the disease. Don't overdo. Don’t get fatigued. Accommodation after accommodation. Get ready for the worst. Three years post diagnosis, Scott found himself depressed, despondent, and uninspired. When his toddler aged grandchildren came to visit Scott couldn’t hold them on his lap. He was too weak. “They were afraid of me,” he said. “It was awful.”
This was enough to get Scott motivated and thinking outside of the box again. He contacted a yoga teacher in Lancaster, PA and started doing yoga – a practice he had never embraced before ALS. Something told him he needed to connect with his core, so he put down the back of his wheelchair and engaged the abdominal muscles that had been dormant way too long. It took 6 months for Scott to sit upright without holding the weight of his body in his arms and hands.
Then Scott found the breath and started moving the feeling of the breath around in his body. Suddenly he was no longer restricted to his respiratory system – his breathing felt completely different. He wasn’t sure why or how, but he knew it was real so he kept practicing. He increased his yoga time to more than an hour, and then up to 2 and now 3 hours daily. He found Mindfulness to support the physiology of his body by visualizing and being with basic body functions like breathing and swallowing.
“What I used to be able to do on AutoPilot,”he said, “I now had to
experience moment by moment.”
Over time, the changes became more and more apparent. Today Scott’s speech is compromised by ALS, but it has steadied and is even improving. At Molly’s wedding, he asked me to read the Father of the Bride welcome and greeting for him, but later felt that he could have done it himself with the microphone. Scott has recently started working with a local company in Human Resources and advises them on employee issues. He’s in contact with several airlines, helping them create a better structure for dealing with motorized wheelchairs and customers with physical disabilities. Perhaps, and best of all, Scott is enjoying life. He spends time with friends and can be found motoring in his wheelchair through the park near their Miami condo with his faithful canine companions Wesley and Finely by his side. But the changes don’t stop there.
“My dad is more thoughtful now,” said Molly. “More present and connected. He’s more observant and has more time for all of us. He’s goofier now too. He loves to laugh that crazy laugh with a twinkle in his eye. I love that. He’s more alert. More focused. And definitely more quirky. He truly isn’t embarrassed by his disability. He owns it – and all that comes with it – without giving in.”
So how is Prana affecting these other areas of Scott’s life? Yoga Philosophy is a philosophy of Wholeness in which it is impossible to separate the Physical body from the Energy Body or the Pyscho-Emotional or the Spiritual Body. The Yogis call these layers of Awareness Koshas and one kosha effects the other. They are integrated aspects of our wholeness. Scott’s Physical body has ALS, but his Energy Body is still strong, and according to Scott, ALS makes his Energy Body more available. When Scott works his Energy Body with breathing exercises and Mindfulness meditation, his Physical body gets a workout
from the inside.
This is where Mindfulness comes into the picture. When Scott’s body is stronger – both physically and energetically – he’s able to be more focused. By practicing focus, he becomes more present emotionally. He is more observant, he laughs easier, and has developed an acceptance for the disabling parts of ALS that allow him to experience life in a new way. Scott is now deeply present.
He still has ups and downs. That’s part of being human. He gets disappointed. He gets angry. He’s not above it all in any way. He’s in it. And that makes all the difference.
As we move into winter, Scott and I continue talking weekly and I continue writing. We hash out questions. We look for answers. We keep hoping that “modern medicine” will finally decide to sit up and take notice. But if not, we’ll keep going.
Measuring improvement in ALS has never been on the table, but Scott is creating a new paradigm. Now nine years post diagnosis with ALS, Scott made it to the dance floor at his youngest daughter’s wedding, and he held all 3 grandchildren in his lap! Scott is focused and full of great humor. Scott and I recently expanded our inquiry to include two other ALS patients that are interested in practicing Yoga and Mindfulness as part of their treatment plan. We’re in this for the long run. Stay tuned for more updates.
Honoring the Journey.