Gracefully Living with ALS by Relying on Our Heart (Sam’s Story, Part 2)

By Kurt Valle, RN, Director, HBI Board Member

My sharing about Sam comes from the perspective of a dear friend and an experienced hospice care provider and it attempts to capture the profound lessons, awe, and gratitude I have experienced as a result of our connection. This post is also a heartfelt continuation of Ed Rubenstein’s recent article, Sam Sutker: Embracing Life and Beyond as a True Lotus.

Like Ed, Sam was also a very close friend of mine. He died from the neurological disease ALS at age 74 and enjoyed a very full life, well-loved by many. Sam worked as a human service provider in the field of Peer Support and as an addiction recovery specialist. Within that community, he was always a gentle magnet for his wisdom, caring, hugs, and love as well as a supportive advocate for how human service providers can directly benefit from heart-mind alignment. Sam never missed an opportunity to help family, friends, colleagues, and his clients to connect with their spiritual hearts and experience deeper layers of love, gratitude, peace, joy, acceptance, compassion, patience, and all the other gifts that flow from being within a state of heart-based presence.

Sam was one of the most remarkable people I have ever met…in life and in facing death. While he had many passions and gifts, I wanted to share the one thing that Sam was most connected with and which formed his core foundation.  

Sam had a very deep connection and a genuine relationship with his spiritual heart. Having had the honor of serving hundreds of hospice patients over the years, I believe that made all the difference in the quality and experience of his transition. 

Sam connecting directly with his heart through Heart Based Meditation and
enjoying the sweet, peaceful, joyful feelings that are always there

Working in hospice care as a registered nurse for decades, I can honestly say without a doubt that due to Sam’s deep connection to his heart, he was able to embrace the dying process because he was able to feel so much Love within and around him. Sam was one of those rare people who was able to naturally transcend many of the negative experiences that often occur due to uncontrolled pain and unresolved guilt, anger and fear…just to name a few. Having helped patients and families manage crises and navigate through the end of life process, I can share that the closer Sam got to dying, the more heart-centered he became. Leading by graceful example, Sam truly showed me how our connection to our spiritual heart can profoundly change and improve the quality of our lives, at every stage.

ALS is one of the most challenging diseases I have ever seen. Sam was the only ALS patient I have ever known who went from diagnosis to death without needing to be on a respirator. I have cared for many ALS patients and often they need large amounts of medications to even breathe. Sam defied that and felt that the medications would cloud his connection to his heart. Other than a few doses of some medication, Sam faced the dying process more from a spiritual than a physical experience. He was a true role model on how to control pain naturally by relying on the power of the heart to help with relaxation and letting go of things that do to serve us.

Sam shares his experience living with ALS over the course of 11 months, including how he stayed grateful even as the disease progresses:

In no way am I saying that taking medication is wrong to control symptoms. Every person going through this journey or one similar has to be open to what’s best for them at the time. For Sam, what was best and most important for him was his heart’s connection to the Love of his Creator, feeling gratitude, and sharing this with all those who came in his presence. 

“Love,” Sam told me, “was to be shared everywhere…all the time…far beyond our limited physical body.”

I sat with Sam a few weeks before the end of his life and listened to what he had to share. I cried and laughed during that precious time. Out of the hundreds of hospice patients I have cared for, including one of my best friends and three of my family members, Sam’s journey was one of the most incredible to me. Sam was facing one of the most brutal diseases yet he was able to trust in his relationship with the Source of True Love. I feel this relationship gave him tremendous peace and a deeper contentment than most people ever experience.

Sam, hours before he passed.

Sam is an inspiration to me and so many others; by sharing and following Love he allowed himself to be brought Home.

Continue reading Part 3 of this special series…