The Harley School

"Great! Count me in," I replied to the email I'd just received. I'd been invited, by Compassionate Care ALS, to meet with some high school students who are learning about ALS. "We are hosting a retreat for high school students from NY all week and they are learning about different aspects of ALS."

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That was enough for me. I mean, we live in an "OK, Boomer..." culture, so I generally take any chance I have to be heard, to be listened to, maybe even to be understood. My disease bullies me with feelings of irrelevance; like I'm just here to take up space and of little to no value-- "...on the sidelines of life without any chance of ever getting into the game..." I've spoken of this before. So I was in. I didn't need to know any more. Something to do. Some place to go. Another step toward being known-- truly known, a fundamental want of the human condition.

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The Harley School cultivates the growth of extraordinary people who aspire to live a life of purpose; to leave the world in a better place than when they found it. How do I know this? I spent five hours with 19 Harley students. Time with the 19 is all I need to know about The Harley School.

We met May 30th, 2024, at Rolling Ridge, a 20th century estate originally developed as a private summer home, now a sprawling retreat center in North Andover, MA. We arrived in drenching rain, making the long entrance to the grand estate seem rather eerie, but in a lifting, hopeful sort of way-- like we were about to be part of something ethereal.

Cathy and Jean, two people living with ALS, and their caregivers, also adventured their way into the castle-like structure. We were all in wheelchairs of different types. People using wheelchairs become intimately familiar with its capabilities and limitations. Each physical destination, no matter how far or short, requires creativity, focus and to varying degrees, help-- all managed with a delicate balance of safety and risk. There is always risk.

In a moment of distraction I glanced up, wishing that I could explore every level-- the winding staircases, the many rooms, the nooks and crannies and the stories they told of a different age, a different time. Much of the furniture beckoned to the Edwardian or Victorian period. Bridgerton anyone?

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As Sawyer welcomed us strumming her soothing acoustic guitar, we gathered in a large room with sky-high ceilings, forming a large circle. Before introductions, Will, a student, lit a candle at the circle's center-- to offer the hope of "community and love" for our day together. We learned names of these students of life. Cathy told her story. Jean told hers. I told mine.

For the next five hours, they cared, asked, listened, inquired, looked us in the eyes as we shared our journeys. I bared my heart and soul, my fears, bared my broken heart. They heard. They helped me move-- physically and mentally. Their active listening supported and encouraged me, helping me overcome my sensitivity about my struggling voice. In contrast, I attended a meeting recently with a group of seasoned business executives; every time I began to speak, all I could see was tilted heads, squinted eyes and looks of general confusion. Listening goes beyond the ears. Isolation.

Harley students lifted me up the stairs to lunch; lifted Cathy in her wheelchair; Jean in hers. They were always present. Always attentive. No phones. Fact. They delivered my (and Kim's) food, poured our water, delivered dessert, cleared out plates. They even asked permission before doing so-- which is next-level when helping with someone with a disability.

Becca, a virtuoso pianist, played music as we periodically took breaks to reflect on our shared experience. There were moments of lightness. Peter said that my voice sounded like the Godfather (Marlon Brando), so I immediately slid into my best Godfather impression.

We sang together. We listened as Addie told about her experience with a woman who was in hospice; how the relationship moved and affected Addie. All I could think of was how the woman was affected-- how Addie's presence and care and love must have breathed such life into the woman; how Addie's showing up, "showing up," provided her with a light in her life. I don't know, of course. I speculate. But what I do know is how having someone there for me at that time in my life, would provide a bright beacon in an often dark tunnel.

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[And here I am almost a year later, preparing to meet with another class of Harley seniors this afternoon. I am so looking forward to connecting with them! I have kept this post, like about 70 others, unpublished, and I think it is because I felt like I could not do justice to the magic of the day...of their gift to me; I could not quite capture it. I so wanted to honor the students.]

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The 19 seniors at The Harley School are part of an elective course of study called "Hospice." Over the course of their senior year, they visited and developed relationships with more than 50 people who are in hospice. From the course description:

"Unlike this class, death is not an elective. Although it is one of two universal human experiences, our culture often ignores, denies, or misconstrues the true nature of death and dying. What happens when we bear witness to this natural process in the cycle of life and develop our ability to be fully present with others when they need us more than ever? It has the potential to change us deeply and fundamentally while shining a brilliant light on the path of our own lives.

With the support of their classmates, teacher, and comfort care home communities, senior students are offered the chance to care for others who truly need their purposeful, non-judgmental attention. In the home-like setting of a comfort care home, opportunities for learning extend beyond a traditional classroom rubric and conventional methods of evaluation. In this course, students will certainly find tangible “learning outcomes” by studying the medical/physical processes associated with dying and the basic nursing assistant skills of comfort care. The ultimate goal, however, will always be rooted in true relationships and connection, which occurs only through empathy and compassion."

Yes, "true relationships and connection." What is more worthy in life?

The students' teacher, Sybil, shared with me: "...We think hospice is about how to live, rather than how to die..."

They gave of themselves; their hearts and souls. Always-- they were present. Always-- they led with compassion. Always-- they brought kindness. Always-- they accepted whatever I could give, with grace...with their hearts and souls. Always-- they brought love.

I am eternally grateful to these students, who inspire me with their courage and bravery. They sustain me today, tomorrow, and forever, regardless of where my journey takes me:

Wyatt, Will, Silver, Sawyer, Peter, Megan, Maya, Lydia, Lily, Joseph, James, Finn, Jaeuck, Dylan, C-Z, Becca, Alicia, Addie, and Anaya...I love you all...

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STOP ASIAN HATE

BLACK LIVES MATTER

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